I feel a little bit sheepish writing about my belief in God. It's difficult in this culture and to me at least, this relationship feels highly personal. I'm no longer affiliated with my old church for reasons both mundane and idiosyncratic but that hasn't diminished my relationship with what I perceive as divine. On the contrary, my last few years have significantly strengthened my sense that we are not alone here and that we each have been singled out for a purpose or purposes. If you were to ask me what mine is, I have only the beginning of an answer. First and foremost, I believe I am here to raise these children under these particular circumstances. I feel called to this work at this time. Every day I wonder if what I do today will make it so that my grandchildren do not have to suffer the abrupt departure of a parent. I'd love to think that I could play some small role in ending this generational dysfunction. But I recognize that parenting is just one aspect of my life, I guess I think that the least that I or any of us can do to justify our time and space on this blue-green planet is to try to be an instrument of peace. I have the prayer of Saint Francis on my bathroom mirror and the part that catches my heart each time I read it is the part that begins with, "Grant that I may comfort, rather than be comforted..." Would that I could wake up each day and not just talk about this, but walk this way too.
This morning I awakened early with a feeling of drift and an oppressive sense of worry. I've been rereading a book I read several years ago and benefitted from, LIT by Mary Karr. I opened to the chapter where the author is struggling to accept and integrate a higher power into her life. Her AA sponsor suggests that if she can't believe in God per se, than perhaps she might think of the group, with all its collective wisdom, as her higher power. She wonders aloud to her sponsor whether or not she should get divorced. Her sponsor suggests she ask someone in the group. So she asks some random stranger sitting on a folding chair next to her. And this is what he says:
"Get down on your knees and yield to what scares you. Yield up what makes you want to scream and cry. It's an empty football stadium with all the lights on. It's a cathedral... And pray. Pray to be an instrument of peace."
"What if I get no answer?" the author asks. His response: "If God hasn't spoken, do nothing. Fulfill the contract you entered into and wait. Go quietly and shine. Those not impelled to act must remain in the cathedral. Don't be lonely...just wait."
I closed the book and my eyes and I too, did what the group member suggested. I established a cathedral of one and offered up the things that make me scream and cry. And then... I felt better, calmer, more ready to face my day.
I was telling someone about this and she suggested that perhaps my higher power was speaking to me through Mary Karr. That somehow, this author and her book became in that instant an earthly representation of my higher power, just as the AA member had been to her. It hadn't really occurred to me that perhpas God speaks to us through each other. And I am relentlessly stubborn in my belief that I am the supreme agent in my life. I seem to be somebody who needs frequent reminding that not only is this not true, but in the face of all this mysterious abundance, I am just a tiny, vulnerable speck. And I am not at all surprised to learn that the only way that God can get me to listen is through the pages of a book.
Friday, August 31, 2012
Tuesday, August 21, 2012
Tired
Can I say what I'm tired of?
I'm tired of my feet tingling.
I'm tired of feeling weak.
I'm tired of having nothing to shampoo.
I'm tired of scarves.
I'm tired of hats.
I'm tired of the look in my eyes.
I'm tired of radiating joint pain.
I'm tired of hot flashes.
I'm tired of treatments.
I'm tired of medications.
I'm tired of appointments.
I'm tired of sore muscles.
I'm tired of worrying.
I'm tired of feeling poisoned.
I'm just really tired.
I'm tired of my feet tingling.
I'm tired of feeling weak.
I'm tired of having nothing to shampoo.
I'm tired of scarves.
I'm tired of hats.
I'm tired of the look in my eyes.
I'm tired of radiating joint pain.
I'm tired of hot flashes.
I'm tired of treatments.
I'm tired of medications.
I'm tired of appointments.
I'm tired of sore muscles.
I'm tired of worrying.
I'm tired of feeling poisoned.
I'm just really tired.
Monday, August 20, 2012
Spam
I survived Taxol treatment #2. It was scary but I did better. The pain from treatment #1 left me feeling both haunted and hunted. This time, I had a new medicine and lower expectations for what the weekend would like. It was more like the flu rather than labor. I have neuropathy now, in both my hands and feet, but this is a pretty common and manageable side effect. I'd take it anyday to the metabolic storm of red sunshine. 26 days and counting.
I feel tender and confused. I've been struggling with feelings of anger this last month and just this weekend, I feel like something has shifted, like I've passed through some kind of portal. I'm going to use this post to try to explain it to myself because as I write these words, I really am not sure exactly what has transpired.
I think the breast cancer has given me some kind of permission to process some latent anger I've been carrying around. Across the last month, I've had some very strange and unpredictable emotional thoughts and impulses. Like one day I fantasized about ripping all the pictures off the walls in my house. Another day I cried when I spilled a glass of iced tea. One night I wanted to break a wineglass on the flagstone step but was too lazy to clean it up and didn't want to explain it to anyone in the morning. It's been strange but I feel it connects to my a theory a friend shared when she heard my diagnosis. She's believes that my breast cancer is the last physical manifestation of my old life and relationship and that purging this tumor will purge me finally of all the ugliness that I endured. I'm beginning to think she's right.
From the waiting room on the surgeon's office, it occurred to me that I could no longer take emails directly from my ex. Sitting there with the news of this disease and it's awful reality crashing down around me, understood finally, in this do-or-die way, that I had to create some kind of a buffer for myself. By law, I'm required to coordinate money and schedules with him, and I'm happy to do that. It's my exposure (through email) to all the other stuff that has been sapping me; the constant demands for friendship, the rationalizations, the timelines, and the confessions, etc. These things no longer pertain to me and they haven't for quite some time yet I've been force fed of diet of information that I don't want or need. It can make a girl feel pretty angry and powerless. In response to all this, my brother-in-law mercifully volunteered to be my spam-catcher. This has been a collassal relief and I gigantic component in this shift I'm struggling to describe here. When I first set up the bounce, I wasn't confident that it was the ethical thing to do. Now with three months under my belt, I'm 100% sure that it is not only ethical but necessary. It's become the way that I've figured out how to put my own life mask on first. I realize now that it's been a very long time since I've been angry about how or why he left. I worked hard to understand that story and I do. This last plate of anger has been about the fact that though he wouldn't leave me alone. I have a right to be pissed off about this. Who wouldn't? But now, I've got a solution. The bounce will continue into the forseeable future. I feel both empowered and newly at peace.
In the book Red Sunshine, the author talked about how she was excited to receive each treatment because it meant that she was doing battle with her disease. I, on the other hand, dread each treatment with every cell in my body. It feels intuitively wrong that I am compromising my overall good health for the sake of 4 rogue centimeters. But I'm beginning to develop this 'bring it' attitude about surgery. If my friend is right, this tumor is the physical manifestation of all of that grief and frustration. And there is no time like the present to get rid of it. Can't wait for October.
I feel tender and confused. I've been struggling with feelings of anger this last month and just this weekend, I feel like something has shifted, like I've passed through some kind of portal. I'm going to use this post to try to explain it to myself because as I write these words, I really am not sure exactly what has transpired.
I think the breast cancer has given me some kind of permission to process some latent anger I've been carrying around. Across the last month, I've had some very strange and unpredictable emotional thoughts and impulses. Like one day I fantasized about ripping all the pictures off the walls in my house. Another day I cried when I spilled a glass of iced tea. One night I wanted to break a wineglass on the flagstone step but was too lazy to clean it up and didn't want to explain it to anyone in the morning. It's been strange but I feel it connects to my a theory a friend shared when she heard my diagnosis. She's believes that my breast cancer is the last physical manifestation of my old life and relationship and that purging this tumor will purge me finally of all the ugliness that I endured. I'm beginning to think she's right.
From the waiting room on the surgeon's office, it occurred to me that I could no longer take emails directly from my ex. Sitting there with the news of this disease and it's awful reality crashing down around me, understood finally, in this do-or-die way, that I had to create some kind of a buffer for myself. By law, I'm required to coordinate money and schedules with him, and I'm happy to do that. It's my exposure (through email) to all the other stuff that has been sapping me; the constant demands for friendship, the rationalizations, the timelines, and the confessions, etc. These things no longer pertain to me and they haven't for quite some time yet I've been force fed of diet of information that I don't want or need. It can make a girl feel pretty angry and powerless. In response to all this, my brother-in-law mercifully volunteered to be my spam-catcher. This has been a collassal relief and I gigantic component in this shift I'm struggling to describe here. When I first set up the bounce, I wasn't confident that it was the ethical thing to do. Now with three months under my belt, I'm 100% sure that it is not only ethical but necessary. It's become the way that I've figured out how to put my own life mask on first. I realize now that it's been a very long time since I've been angry about how or why he left. I worked hard to understand that story and I do. This last plate of anger has been about the fact that though he wouldn't leave me alone. I have a right to be pissed off about this. Who wouldn't? But now, I've got a solution. The bounce will continue into the forseeable future. I feel both empowered and newly at peace.
In the book Red Sunshine, the author talked about how she was excited to receive each treatment because it meant that she was doing battle with her disease. I, on the other hand, dread each treatment with every cell in my body. It feels intuitively wrong that I am compromising my overall good health for the sake of 4 rogue centimeters. But I'm beginning to develop this 'bring it' attitude about surgery. If my friend is right, this tumor is the physical manifestation of all of that grief and frustration. And there is no time like the present to get rid of it. Can't wait for October.
Thursday, August 9, 2012
The Perfect Teacher
You can't take things away from people with cancer. I was told by a nurse at my final treatment of red sunshine that I would not need to take the white blood cell shot with Taxol. The shot makes you sore and is yet another side effect front you have to manage. This turned out not to be true and I can't say how disappointing this little loss was to me. I'm still struggling with it a bit. But that's the moral for today: don't take things away from people with cancer.
I was also told by numerous people that Taxol would provide an easier ride than Red Sunshine. This turned out, for me so far, to be not true. On Friday I got my shot. I then took a bike ride and later, an invigorating evening swim with my dog in the good ole' Atlantic. On Saturday morning, when I woke up, I felt as if I had been hit by a car. I did the thing I dreaded might happen in this process: I sat on the couch in front of my kids and wept from bone pain. I called the oncology center on Saturday morning and the doctor suggested Alleve. I took the therapeutic dose of Alleve dutifully through the weekend while simultaneously counting the hours, like a junkie, till I could get my hands on the next dose. My poor liver and it really didn't do much to mitigate the pain. On Monday morning, I called the oncology center again and asked, if they couldn't help me with pain, could I at least get an explanation for it? I figured if I could understand it somehow, I might cope better. It was like labor before you get to the hospital-- a chronic, ongoing soreness and ache thudded with periodic sharp, racing pains.
The nurse put me on steroids and suggested that since I'd handled the pain from the shot, it was probably the Taxol that was creating such sensory havoc in my system. She promised that we would start me on sterioids again prior to treatment #6, which is on Thursday next. In the meantime, my sister didn't leave my side and this little adventure in staggering pain has upped my game, yet again, in terms of teaching me to ask for help and for letting things go. Feels like a victory and a defeat at the same time.
The painful weekend has given me much to think about. In her book, Illness as Metaphor, Susan Sontag writes:
"Illness is the night-side of life, a more onerous citizenship. Everyone holds dual citizenship in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
Ain't that something? Having previously been a person who took only a multi-vitamin to maintain a kind of effortless good health, this has been a crash course in medicine, self-care, technology, pharmacology, health insurance, vulnerability, faith, and fear. A with the exception of faith, I have no interest in learning about those other things. But here I've been given this night-side passport and I'm determined to make meaning out of it. So here a beginning attempt:
The first point of meaning is that cancer is this and that. What I mean is that I believe I will be cured while I embrace the unpredictability of this disease. I've learned that cancer clones itself, over and over and that is why it is so dangerous. Unlike healthy cells that have an innate mechanism to hinder their own growth, they will just keep reproducing. Cancer cells are neither virus nor bacteria so they can't be targeted as foreign. In order to kill cancer, you have to kill human cells and the good ones are hard to discriminate from the bad. Then the question becomes, how many human cells can you kill before you kill the patient? While cancer is in the process of cloning itself over and over, each generation creates a handful of cells that that are genetically just different enough that they could be resisitant to the medicine you are taking. This is the biological explanation for unpredictable. And it is why I think I would be foolish to overlook its true nature. It wasn't until I was in my thirties (I know, late bloomer) that I was able to consider something as this and that. It's hard to do, still, but I think it helps me or anyone hold things in all of their complexities. So I will hopefully and likely be cured and cancer is unpredictable.
The second point of meaning is that I've had some time to think more concretely about my death and death in general. Unless you die very young and/or suddenly, we all have to do this sooner or later. These midnight conversations have been less morbid than I might have thought. I'm kind of left with the understanding that though this is hopefully and likely not the end, it certainly could be. And if it is, I have no control whatsoever. I don't feel done, I don't think it's what is best for my kids and it certainly doesn't feel fair. But really and truly, there is NOTHING I or any of us can do about that. I understand this in a new way. And there is something freeing about that.
The last point of meaning has been about letting go. As the pained bubbled and bubbled over the weekend leaving me spent, I had to continue to give up on things. I couldn't make decisions for myself. I couldn't do things that give me pleasure. I was briefly left with this little, challenging life. It helps me to see how people do the ultimate work of letting go and welcoming the end. When a life gets smaller, it may also become less meaningful. So it forces you to hold what you are left with pretty loosely. And that's sounds like not only a good way to die but also a good way to live, no?
Is this too much? I know it sounds pretty dark. But in this moment, after a nap and reprieve from the pain, it doesn't feel bad or morbid. It feels real. Death is the perfect teacher, they say, and I'm coming to understand why.
I was also told by numerous people that Taxol would provide an easier ride than Red Sunshine. This turned out, for me so far, to be not true. On Friday I got my shot. I then took a bike ride and later, an invigorating evening swim with my dog in the good ole' Atlantic. On Saturday morning, when I woke up, I felt as if I had been hit by a car. I did the thing I dreaded might happen in this process: I sat on the couch in front of my kids and wept from bone pain. I called the oncology center on Saturday morning and the doctor suggested Alleve. I took the therapeutic dose of Alleve dutifully through the weekend while simultaneously counting the hours, like a junkie, till I could get my hands on the next dose. My poor liver and it really didn't do much to mitigate the pain. On Monday morning, I called the oncology center again and asked, if they couldn't help me with pain, could I at least get an explanation for it? I figured if I could understand it somehow, I might cope better. It was like labor before you get to the hospital-- a chronic, ongoing soreness and ache thudded with periodic sharp, racing pains.
The nurse put me on steroids and suggested that since I'd handled the pain from the shot, it was probably the Taxol that was creating such sensory havoc in my system. She promised that we would start me on sterioids again prior to treatment #6, which is on Thursday next. In the meantime, my sister didn't leave my side and this little adventure in staggering pain has upped my game, yet again, in terms of teaching me to ask for help and for letting things go. Feels like a victory and a defeat at the same time.
The painful weekend has given me much to think about. In her book, Illness as Metaphor, Susan Sontag writes:
"Illness is the night-side of life, a more onerous citizenship. Everyone holds dual citizenship in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."
Ain't that something? Having previously been a person who took only a multi-vitamin to maintain a kind of effortless good health, this has been a crash course in medicine, self-care, technology, pharmacology, health insurance, vulnerability, faith, and fear. A with the exception of faith, I have no interest in learning about those other things. But here I've been given this night-side passport and I'm determined to make meaning out of it. So here a beginning attempt:
The first point of meaning is that cancer is this and that. What I mean is that I believe I will be cured while I embrace the unpredictability of this disease. I've learned that cancer clones itself, over and over and that is why it is so dangerous. Unlike healthy cells that have an innate mechanism to hinder their own growth, they will just keep reproducing. Cancer cells are neither virus nor bacteria so they can't be targeted as foreign. In order to kill cancer, you have to kill human cells and the good ones are hard to discriminate from the bad. Then the question becomes, how many human cells can you kill before you kill the patient? While cancer is in the process of cloning itself over and over, each generation creates a handful of cells that that are genetically just different enough that they could be resisitant to the medicine you are taking. This is the biological explanation for unpredictable. And it is why I think I would be foolish to overlook its true nature. It wasn't until I was in my thirties (I know, late bloomer) that I was able to consider something as this and that. It's hard to do, still, but I think it helps me or anyone hold things in all of their complexities. So I will hopefully and likely be cured and cancer is unpredictable.
The second point of meaning is that I've had some time to think more concretely about my death and death in general. Unless you die very young and/or suddenly, we all have to do this sooner or later. These midnight conversations have been less morbid than I might have thought. I'm kind of left with the understanding that though this is hopefully and likely not the end, it certainly could be. And if it is, I have no control whatsoever. I don't feel done, I don't think it's what is best for my kids and it certainly doesn't feel fair. But really and truly, there is NOTHING I or any of us can do about that. I understand this in a new way. And there is something freeing about that.
The last point of meaning has been about letting go. As the pained bubbled and bubbled over the weekend leaving me spent, I had to continue to give up on things. I couldn't make decisions for myself. I couldn't do things that give me pleasure. I was briefly left with this little, challenging life. It helps me to see how people do the ultimate work of letting go and welcoming the end. When a life gets smaller, it may also become less meaningful. So it forces you to hold what you are left with pretty loosely. And that's sounds like not only a good way to die but also a good way to live, no?
Is this too much? I know it sounds pretty dark. But in this moment, after a nap and reprieve from the pain, it doesn't feel bad or morbid. It feels real. Death is the perfect teacher, they say, and I'm coming to understand why.
Thursday, August 2, 2012
What You Cling To
My flight was delayed so I returned from the conference last night at midnight and was up at 6 to head over to treatment #5. But the trip was great. I got to stay in a very elegant hotel with one of my BFF's, have a nice dinner with my bike trip friends, and tcaught a break from my hectic routine at home. I feel crappy today but I kind of expected that and I'm giving in to it. I've been on the couch since treatment with sisters and kids in and out. Could always be worse.
I had a really nice trip. I'm so lucky to report that I have friends at work. Not only are they friends, they are also people I learn from, respect, and admire. My boss and other colleagues worked it out so that I didn't have to work the booth. This was a relieft on two fronts. First, it is strangely tiring. Second, I was able to attend sessions. The sessions were great since I feel I have a lot to learn about the communication aspects of my work and It also renewed in me a sense that I am on a learning curve with this position and this company. This makes me feel hopeful and curious about my work and about our educational mission. It's nice (and perhaps rare?) to step out of your routine and find good news waiting for you.
My sister surprised me in my driveway three minutes before I was scheduled to leave and offered to drive me to Logan and then my other sister and niecearranged to picked me up on my return.. How awesome was that? We had a chance to chat and I was able to organize my approach to this trip. I decided that if I was going to go and present if I could follow these two tennants: 1. I would not get nervous about presenting since I actually knowledgeable enough to talk about the topic and 2. I was going to own my disease and it's result on my appearance. It's simple but it worked. The presentation went well and for the most part, I did own my appearance. I wasn't comfortable but I wasn't freakishly uncomfortable either. People in the airport and in the conference center did look twice at me. And often enough, they made encouraging eye contact and smiled and gave me free coffee. It's not the equation I'm most comfortable with nor is it one I hoped for. But it's what I've got right now.
My sister told me that she thought me brave to go. I was considering this and trying to figure out how to accept the compliment and then I showed up in the conference center and looked around. This conference is an international gathering of parents, kids, teachers and clincians who use or are interested in how to implement assistive technology to improve the lives of people with disabilities. I'm always awestruck by the creativity and commitment of the people in this field. The families leave me awestruck-- what they face and how they adapt and strategize to make the lives of loved ones easier and more functional. For me, going to a conference bald is brave. But the kind of bravery you see around every corner at ISAAC is in a whole other echelon.
I got lost twice walking the four blocks between the conference center and the hotel and found myself twice walking by an old church that had posted this aphorism: YOU ONLY LOSE WHAT YOU CLING TO. I couldn't help, in that most egocentric way, to think that this was talking to me directly. I've been conducting a crazy vigil about my hair. I'm checking it all the time and convincing myself that it is growing back only to reverse my thinking in the next hour. I cling to vanity and it's debilitating and ugly, however, the inevitable is happening. I'm putting less energy around the baldness. Sometimes I'm too lazy for a scarf and a hat and just wear a hat. It's scary but it seems like some version of letting go. I realize how powerful the result of letting go can be. But the process has a kind of slow motion freefall to it. I guess all one can do is keep on keeping on.
Did I say this already? I'm on track vis a vis treatment. So far I haven't missed a treatment or a shot (which can happen if your blood work is off or you get sick, etc.). If all goes well, I'll have the last infusion on 9/13 with a smaller, day surgery following and then six weeks of radiation. This should all be behind me by Thanksgiving. That's the hope. I'm saying this so if you think about it, you can hope with me. I can't wait. It's August. I am moving along but I can't, can't wait.
I had a really nice trip. I'm so lucky to report that I have friends at work. Not only are they friends, they are also people I learn from, respect, and admire. My boss and other colleagues worked it out so that I didn't have to work the booth. This was a relieft on two fronts. First, it is strangely tiring. Second, I was able to attend sessions. The sessions were great since I feel I have a lot to learn about the communication aspects of my work and It also renewed in me a sense that I am on a learning curve with this position and this company. This makes me feel hopeful and curious about my work and about our educational mission. It's nice (and perhaps rare?) to step out of your routine and find good news waiting for you.
My sister surprised me in my driveway three minutes before I was scheduled to leave and offered to drive me to Logan and then my other sister and niecearranged to picked me up on my return.. How awesome was that? We had a chance to chat and I was able to organize my approach to this trip. I decided that if I was going to go and present if I could follow these two tennants: 1. I would not get nervous about presenting since I actually knowledgeable enough to talk about the topic and 2. I was going to own my disease and it's result on my appearance. It's simple but it worked. The presentation went well and for the most part, I did own my appearance. I wasn't comfortable but I wasn't freakishly uncomfortable either. People in the airport and in the conference center did look twice at me. And often enough, they made encouraging eye contact and smiled and gave me free coffee. It's not the equation I'm most comfortable with nor is it one I hoped for. But it's what I've got right now.
My sister told me that she thought me brave to go. I was considering this and trying to figure out how to accept the compliment and then I showed up in the conference center and looked around. This conference is an international gathering of parents, kids, teachers and clincians who use or are interested in how to implement assistive technology to improve the lives of people with disabilities. I'm always awestruck by the creativity and commitment of the people in this field. The families leave me awestruck-- what they face and how they adapt and strategize to make the lives of loved ones easier and more functional. For me, going to a conference bald is brave. But the kind of bravery you see around every corner at ISAAC is in a whole other echelon.
I got lost twice walking the four blocks between the conference center and the hotel and found myself twice walking by an old church that had posted this aphorism: YOU ONLY LOSE WHAT YOU CLING TO. I couldn't help, in that most egocentric way, to think that this was talking to me directly. I've been conducting a crazy vigil about my hair. I'm checking it all the time and convincing myself that it is growing back only to reverse my thinking in the next hour. I cling to vanity and it's debilitating and ugly, however, the inevitable is happening. I'm putting less energy around the baldness. Sometimes I'm too lazy for a scarf and a hat and just wear a hat. It's scary but it seems like some version of letting go. I realize how powerful the result of letting go can be. But the process has a kind of slow motion freefall to it. I guess all one can do is keep on keeping on.
Did I say this already? I'm on track vis a vis treatment. So far I haven't missed a treatment or a shot (which can happen if your blood work is off or you get sick, etc.). If all goes well, I'll have the last infusion on 9/13 with a smaller, day surgery following and then six weeks of radiation. This should all be behind me by Thanksgiving. That's the hope. I'm saying this so if you think about it, you can hope with me. I can't wait. It's August. I am moving along but I can't, can't wait.
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