Just a little update. I got a call from my onc nurse today to say that my oncologist wanted to cancel chemo for Friday and has been consulting with an allergy specialist to see if there might be some immune/allergy complication to all of this. I see him tomorrow morning at 9:15a to get the ball rolling.
I can't express the feeling of relief that flooded over me when I got off of the phone. I do like my oncologist and it felt great to have him be so proactive on next steps. We may not find anything, but at least we will take the time to check out what might be happening if there is something there. In the meantime, I am going to focus on accepting these medicines into my body as a gift instead of the caustic poison I keep hating.
So, reprieve for a week while we work this out.Thank you for all of the support and awesome well-wishes.
Wednesday, June 29, 2011
Tuesday, June 28, 2011
Update
"The Buddha taught that flexibility and openness bring strength and that running from groundlessness weakens us and brings pain. But do we understand that becoming familiar with the running away is the key? Openness doesn't come from resisting our fears but from getting to know them well.
Rather than going after those walls and barriers with a sledgehammer, we pay attention to them. With gentleness and honesty, we move closer to those walls. We touch them and smell them and get to know them well. We begin a process of acknowledging our aversions and our cravings. We become familiar with the strategies and beliefs we use to build the walls: What are the stories I tell myself? What repels me and what attracts me? We start to get curious about what's going on. Without calling what we see right or wrong, we simply look as objectively as we can. We can observe ourselves with humor, not getting overly serious, moralistic or uptight about this investigation. Year after year, we train in remaining open and receptive to whatever arises. Slowly, very slowly, the cracks in the wall seem to widen and, as if by magic, bodhichitta is able to flow freely." (From the book "The Places That Scare You: A Guide to Fearlessness in Difficult Times" by Pema Chödrön
I am sitting with a pit in my stomach tonight, not really sure what to do next. Not knowing, of course, if the feelings I have are rational and *real* and need to be observed/listened to or if I am letting my anxiety get the best of me. Do I trust myself or am I being hysterical?
A little back story...
I woke up on Sunday after chemo on Friday with an ache in my arm which I quickly decided was just something that happens as a result of chemo. I mean, the stuff is hard on the veins even though my infusion went off without a hitch. No worries, it will pass. But Sunday turned into a grumpy Monday and finally Tuesday I emailed my oncology nurse to say that maybe we should think about getting a port for the next infusion if my veins were going to hurt like this going forward.
She called me immediately asking "What vein pain? What are you talking about?"
So, I drove home from work and met her at the clinic in order to have tests run and to find that I have a superficial blood clot in my arm. Not a lot of drama, on motrin for a week, allowed to fly, etc. We talked about placing a port near my collarbone that will send the chemo right into the superior vena cava, allowing the chemo to disperse quickly into my system.
For some reason that idea has made my gut roil every time I've thought about it. Something about the idea of the chemo going right into the core of my body, something about that just doesn't sit well with me.
Today we met with my oncologist who looked at me honestly and said that he didn't know why the clot happened, that it's not something he's seen before and given what happened with the mammogeddon, it's unusual. He looked worried when he said this (which totally freaked me out although I appreciate his honesty) and went on to say that he felt like it could be one of three things: 1) a problem with the iv (not likely) 2) a clotting disorder of some sort (I have had a superficial clot before--but have had 3 surgeries in 3 months) or 3) an immune or allergic response. We can control for #1 and #2 through the port placement and blood thinners, but #3 is a wild card.
His thought is to keep moving on with the chemo. My sisters want me to go get a second opinion. Nick's not feeling totally confident. I think my gut is telling me that something is up and that I need to get that figured out before we go another round. But there is this timing and effectiveness of treatment thing which means I can't just stop and take stock so easily. And you can't snap your fingers and get a consult at the mecca of cancer care (MDA) overnight (although I am trying). What if this is all nothing but worry? Why am I worried about that?
So, I think I am going to trust my gut on this and go south for a second opinion if I can. I worry that I am going to offend these folks who have been so nice to me, who have given me good care. But I feel like things aren't very coordinated here, and that freaks me out.
I am being pulled off to bed by my husband now that we both realize it's 11:15p. Not that sleep's going to be very easy tonight. Keep me in your thoughts, prayers, meditations and the like this week. Love you all.
Rather than going after those walls and barriers with a sledgehammer, we pay attention to them. With gentleness and honesty, we move closer to those walls. We touch them and smell them and get to know them well. We begin a process of acknowledging our aversions and our cravings. We become familiar with the strategies and beliefs we use to build the walls: What are the stories I tell myself? What repels me and what attracts me? We start to get curious about what's going on. Without calling what we see right or wrong, we simply look as objectively as we can. We can observe ourselves with humor, not getting overly serious, moralistic or uptight about this investigation. Year after year, we train in remaining open and receptive to whatever arises. Slowly, very slowly, the cracks in the wall seem to widen and, as if by magic, bodhichitta is able to flow freely." (From the book "The Places That Scare You: A Guide to Fearlessness in Difficult Times" by Pema Chödrön
I am sitting with a pit in my stomach tonight, not really sure what to do next. Not knowing, of course, if the feelings I have are rational and *real* and need to be observed/listened to or if I am letting my anxiety get the best of me. Do I trust myself or am I being hysterical?
A little back story...
I woke up on Sunday after chemo on Friday with an ache in my arm which I quickly decided was just something that happens as a result of chemo. I mean, the stuff is hard on the veins even though my infusion went off without a hitch. No worries, it will pass. But Sunday turned into a grumpy Monday and finally Tuesday I emailed my oncology nurse to say that maybe we should think about getting a port for the next infusion if my veins were going to hurt like this going forward.
She called me immediately asking "What vein pain? What are you talking about?"
So, I drove home from work and met her at the clinic in order to have tests run and to find that I have a superficial blood clot in my arm. Not a lot of drama, on motrin for a week, allowed to fly, etc. We talked about placing a port near my collarbone that will send the chemo right into the superior vena cava, allowing the chemo to disperse quickly into my system.
For some reason that idea has made my gut roil every time I've thought about it. Something about the idea of the chemo going right into the core of my body, something about that just doesn't sit well with me.
Today we met with my oncologist who looked at me honestly and said that he didn't know why the clot happened, that it's not something he's seen before and given what happened with the mammogeddon, it's unusual. He looked worried when he said this (which totally freaked me out although I appreciate his honesty) and went on to say that he felt like it could be one of three things: 1) a problem with the iv (not likely) 2) a clotting disorder of some sort (I have had a superficial clot before--but have had 3 surgeries in 3 months) or 3) an immune or allergic response. We can control for #1 and #2 through the port placement and blood thinners, but #3 is a wild card.
His thought is to keep moving on with the chemo. My sisters want me to go get a second opinion. Nick's not feeling totally confident. I think my gut is telling me that something is up and that I need to get that figured out before we go another round. But there is this timing and effectiveness of treatment thing which means I can't just stop and take stock so easily. And you can't snap your fingers and get a consult at the mecca of cancer care (MDA) overnight (although I am trying). What if this is all nothing but worry? Why am I worried about that?
So, I think I am going to trust my gut on this and go south for a second opinion if I can. I worry that I am going to offend these folks who have been so nice to me, who have given me good care. But I feel like things aren't very coordinated here, and that freaks me out.
I am being pulled off to bed by my husband now that we both realize it's 11:15p. Not that sleep's going to be very easy tonight. Keep me in your thoughts, prayers, meditations and the like this week. Love you all.
Tuesday, June 21, 2011
Ashen from the Inside
I wake up in the morning with a face that resembles the Laughing Buddha, except that I'm not laughing, just swollen and red from the steroids that have wrecked my sleep and made me edgy. I remember Mom looking like this too so I welcome the day with the sarcastic smile she used to give to say "this shit sucks" when we'd comment on the chemo.
Chemo fucking sucks.
Four days in and I can tell the difference already. The skin on my face has grown rough, I can feel the little hairs on my head starting to revolt. My breathing feels off and my scars hurt. I feel burnt from the inside out. I am in no way myself.
It's really hard not to despair right now, so newly on the edge of this phase, looking out 16 weeks and wondering how I am going to make it through this time. Maybe it will get easier (ha), maybe I am just going deep in this feeling right now, exploring it and making it my own before I put it aside and live through it. But I will say that I have never felt anything like this before in my life. And it's frightening.
But, as my friend Liz said tonight when I noted "chemo sucks ass" on my Facebook page: "Yes, it does. But then you are here. Healthy."
That's what I am trying to grasp on to tonight, the reality that I will come out of this healthy or somewhat like I was before this began. I hate my vanity, but I hate looking the way I look, feeling the changes in my body, feeling so hollow, ashen and carved out on the inside. I can't quite figure out how to pass the time, to mark the passage of this time, to check off the days and weeks coming up so that I can cling to it being over. I need something to physically manifest this experience to let me know where I am in the process. It just seems so long.
I guess there are things to look forward to...a wonderful sister in law getting married, a conference in San Francisco in October...little things that will mark the end time after this has come and gone. I need to set these markers up. I need to find the rock cairns along the way from women who have already traversed this path and can help me see the other side. I need to find the reason for the movement forward, every day.
Right now, I just feel like curling up and escaping for a few months.
Tonight I am off of the steroids for the first night, so here is to better sleep, a less puffy face in the morning, maybe a real Laughing Buddha to greet me as I walk out tomorrow. Here's to making it through. Here's to moving it forward.
Chemo fucking sucks.
Four days in and I can tell the difference already. The skin on my face has grown rough, I can feel the little hairs on my head starting to revolt. My breathing feels off and my scars hurt. I feel burnt from the inside out. I am in no way myself.
It's really hard not to despair right now, so newly on the edge of this phase, looking out 16 weeks and wondering how I am going to make it through this time. Maybe it will get easier (ha), maybe I am just going deep in this feeling right now, exploring it and making it my own before I put it aside and live through it. But I will say that I have never felt anything like this before in my life. And it's frightening.
But, as my friend Liz said tonight when I noted "chemo sucks ass" on my Facebook page: "Yes, it does. But then you are here. Healthy."
That's what I am trying to grasp on to tonight, the reality that I will come out of this healthy or somewhat like I was before this began. I hate my vanity, but I hate looking the way I look, feeling the changes in my body, feeling so hollow, ashen and carved out on the inside. I can't quite figure out how to pass the time, to mark the passage of this time, to check off the days and weeks coming up so that I can cling to it being over. I need something to physically manifest this experience to let me know where I am in the process. It just seems so long.
I guess there are things to look forward to...a wonderful sister in law getting married, a conference in San Francisco in October...little things that will mark the end time after this has come and gone. I need to set these markers up. I need to find the rock cairns along the way from women who have already traversed this path and can help me see the other side. I need to find the reason for the movement forward, every day.
Right now, I just feel like curling up and escaping for a few months.
Tonight I am off of the steroids for the first night, so here is to better sleep, a less puffy face in the morning, maybe a real Laughing Buddha to greet me as I walk out tomorrow. Here's to making it through. Here's to moving it forward.
Thursday, June 16, 2011
Floating
I hold in font of my eyes an image of a leaf on the water. The clear water simultaneously reads brown from the silt below and blue from the skies above. The leaf floats gently, swirls a bit, catches the slow current and moves lazily by. It is sunny and warm in the shade covering the stream. It reminds me of camp summers riding in Colorado, our horses bending their heads for a cool drink while we sip from our canteens. Peaceful, beautiful, calm, centered.
My friend Joanna gave me the image of a leaf on the water when I was telling her of my anxiety about starting chemo tomorrow. "Be a leaf on a stream", she said, and that image came to my mind.
I started out this week in a panic, feeling as though I had put off studying for very important test. Three weeks became two weeks became WHAM! one week with no time to get my life organized before this phase came in. I was supposed to be set up for acupuncture and reiki and have my house cleaned and be meditating and sure as hell be feeling more comfortable and confident that I was at that particular moment. I was supposed to be ready, damn it. I was arrested with dread and fear and disappointment in myself for not preparing to face the chemo better.
But this week the kids went to see their Oklahoma aunties and uncles who welcomed them with open arms and lots of love and gave Nick and me the breathing room we really needed. Days of flexible time and no guilt around being home late from work and relaxed dinners with a man I really love took the anxiety and gave it a coconut butter rub down so that it couldn't stick its sticky claws in quite so deep. I feel somewhat relaxed, that leaf on the stream, just letting myself be.
The past two weeks have been full of interesting observations about my life, too. Things I have always known about myself, but things I think I am coming to understand. This experience has made me more authentic, I think, more willing to stick to things that I believe even though they may not be popular. It's made me more willing to risk at work and in my community life. It's made me realize that this is the shot I get and I need to do according to my true self. There aren't a lot of second chances to do this all over again.
It has also given me insight about something peculiar and telling about my personality that I only just realized yesterday in the car. I had my ipod on shuffle and was listening to a really wonderful mix of music. As the program would dip into the 2,150 songs available, I would find myself intrigued by a song, instantly nostalgic for the memory it evoked or simply enjoying what it had to offer. But shortly into it, my mind would wonder what song was next, effectively ruining the experience of the current song in anticipation of what was to come.
I am hard, hard, hard wired this way. It's not only the way my mind creates and visions new work and ideas, but also makes sense of the world. Anticipating the next song, much like anticipating the next phase, the next treatment, the next reality can be exhausting and allows the monkey mind to run rampant with the endless permutations and combinations that the world of medicine holds.
So tomorrow as they plug me into the machine and we begin the 16 week trip down this potholed path, I am going to keep with that image of the leaf in the stream, of the cool mountain air, the smell of horses and leather bridles, the feel of boots on my feet and nothing to consider but what lies just shortly ahead.
Wish me luck.
My friend Joanna gave me the image of a leaf on the water when I was telling her of my anxiety about starting chemo tomorrow. "Be a leaf on a stream", she said, and that image came to my mind.
I started out this week in a panic, feeling as though I had put off studying for very important test. Three weeks became two weeks became WHAM! one week with no time to get my life organized before this phase came in. I was supposed to be set up for acupuncture and reiki and have my house cleaned and be meditating and sure as hell be feeling more comfortable and confident that I was at that particular moment. I was supposed to be ready, damn it. I was arrested with dread and fear and disappointment in myself for not preparing to face the chemo better.
But this week the kids went to see their Oklahoma aunties and uncles who welcomed them with open arms and lots of love and gave Nick and me the breathing room we really needed. Days of flexible time and no guilt around being home late from work and relaxed dinners with a man I really love took the anxiety and gave it a coconut butter rub down so that it couldn't stick its sticky claws in quite so deep. I feel somewhat relaxed, that leaf on the stream, just letting myself be.
The past two weeks have been full of interesting observations about my life, too. Things I have always known about myself, but things I think I am coming to understand. This experience has made me more authentic, I think, more willing to stick to things that I believe even though they may not be popular. It's made me more willing to risk at work and in my community life. It's made me realize that this is the shot I get and I need to do according to my true self. There aren't a lot of second chances to do this all over again.
It has also given me insight about something peculiar and telling about my personality that I only just realized yesterday in the car. I had my ipod on shuffle and was listening to a really wonderful mix of music. As the program would dip into the 2,150 songs available, I would find myself intrigued by a song, instantly nostalgic for the memory it evoked or simply enjoying what it had to offer. But shortly into it, my mind would wonder what song was next, effectively ruining the experience of the current song in anticipation of what was to come.
I am hard, hard, hard wired this way. It's not only the way my mind creates and visions new work and ideas, but also makes sense of the world. Anticipating the next song, much like anticipating the next phase, the next treatment, the next reality can be exhausting and allows the monkey mind to run rampant with the endless permutations and combinations that the world of medicine holds.
So tomorrow as they plug me into the machine and we begin the 16 week trip down this potholed path, I am going to keep with that image of the leaf in the stream, of the cool mountain air, the smell of horses and leather bridles, the feel of boots on my feet and nothing to consider but what lies just shortly ahead.
Wish me luck.
Wednesday, June 8, 2011
To Foob or Not to Foob? Not a Simple Question
We have a lot of discussion about "foobs" around here lately. Foobs are our family name for "fake boobs" or the glorified rolled up socks that have passed as interim prostheses that I wore until I got my new (and, frankly, not improved) "falsies" (falsies is a term I remember my mom using for fake boobs...falsies, foobs...).
Ava is most concerned about the foobs and their application. I am usually without them in the house and outside in the neighborhood because they frankly aren't that comfortable. Before we leave to go anywhere, she whispers in a conspiratorial voice "Mom, are you going to put the foobs in?" It's worrying to her when I don't wear them. I suspect it's her trying to normalize what is going on. I don't blame her. Moms are supposed to look a certain way and boobs are normally a part of that package. And then there are the other kids...not that anyone has asked about why I don't have boobs anymore, but I think it's just a matter of time. My kids know, but what do I say to other people's children? "I just don't have them anymore?" WTH?
But it brings up a lot of stuff for me. Wearing the foobs feels like a lie. They are so not me, especially these foobs that are big puff ball socky things that move around in my tank top or the silicone masses that feel like the joke sumo wrestler fat suits that people don to wrestle. Seriously, people. One in 8 women gets breast cancer and these plasticy, mounded things that don't look like real boobs (think 50's style bra ads, bullet boobs) nor feel anything remotely like real boobs are what we get? We have robots to do hysterectomies but can't make a good looking fake breast? Gah.
But not wearing them leaves me feeling like an embarrassed cat that has had her hair shaved off. Women tend to say "oh, nobody notices! They look at your face, Fran, not at your chest." But that is totally not true. People notice, especially men, and it's awkward. I don't know if men knowing you have fake boobs is any more awkward or not. For some reason I think it's not (or that's what men have told me about implants, at least). But the absence of boobs is awkward for people. So we are back in that thing again where you feel like you are embarrassed and they are embarrassed that they notice so you wear the foobs and feel a little bit like a fraud and get irritable about the weight and discomfort and, shit, you are back at another damned-if-you-do scenario that seems to pervade the cancer journey.
It also brings up the subject of le wig. It's summer and I am so not looking forward to the idea of wearing a cap of hair on my head. I know that around the neighborhood and even around town a scarf will be fine. But what about the workplace? Not wearing a wig at work seems kind of like going out without the foobs. Could I go without the foobs and wig at work? No foobs and a crazy Hermes scarf on my head. Oh lordy.
I know a lot of people will say "Just do whatever feels right!" but it just not that simple, it's not that black and white. There are levels of complexity to this whole ordeal that make it worse than just having cancer. It's one thing to have cancer and have people know and be freaked out and feel sorry for you or worried about you. It's another to add insult to injury with the disfigurement and neon sign baldness that it brings. Things you can hide, things you can't. Things that are a huge drag. Things that draw attention that a person like me and my mother before me hate most.
So I am not sure where I sit on all of this. I'm going to poke around on the web a little bit to see where I want to be in this interim space of booblessness. Speaking of, we are getting some really rad button ideas! Maybe on the next post we will have a sample to consider...I think we may have to vote.
Ava is most concerned about the foobs and their application. I am usually without them in the house and outside in the neighborhood because they frankly aren't that comfortable. Before we leave to go anywhere, she whispers in a conspiratorial voice "Mom, are you going to put the foobs in?" It's worrying to her when I don't wear them. I suspect it's her trying to normalize what is going on. I don't blame her. Moms are supposed to look a certain way and boobs are normally a part of that package. And then there are the other kids...not that anyone has asked about why I don't have boobs anymore, but I think it's just a matter of time. My kids know, but what do I say to other people's children? "I just don't have them anymore?" WTH?
But it brings up a lot of stuff for me. Wearing the foobs feels like a lie. They are so not me, especially these foobs that are big puff ball socky things that move around in my tank top or the silicone masses that feel like the joke sumo wrestler fat suits that people don to wrestle. Seriously, people. One in 8 women gets breast cancer and these plasticy, mounded things that don't look like real boobs (think 50's style bra ads, bullet boobs) nor feel anything remotely like real boobs are what we get? We have robots to do hysterectomies but can't make a good looking fake breast? Gah.
But not wearing them leaves me feeling like an embarrassed cat that has had her hair shaved off. Women tend to say "oh, nobody notices! They look at your face, Fran, not at your chest." But that is totally not true. People notice, especially men, and it's awkward. I don't know if men knowing you have fake boobs is any more awkward or not. For some reason I think it's not (or that's what men have told me about implants, at least). But the absence of boobs is awkward for people. So we are back in that thing again where you feel like you are embarrassed and they are embarrassed that they notice so you wear the foobs and feel a little bit like a fraud and get irritable about the weight and discomfort and, shit, you are back at another damned-if-you-do scenario that seems to pervade the cancer journey.
It also brings up the subject of le wig. It's summer and I am so not looking forward to the idea of wearing a cap of hair on my head. I know that around the neighborhood and even around town a scarf will be fine. But what about the workplace? Not wearing a wig at work seems kind of like going out without the foobs. Could I go without the foobs and wig at work? No foobs and a crazy Hermes scarf on my head. Oh lordy.
I know a lot of people will say "Just do whatever feels right!" but it just not that simple, it's not that black and white. There are levels of complexity to this whole ordeal that make it worse than just having cancer. It's one thing to have cancer and have people know and be freaked out and feel sorry for you or worried about you. It's another to add insult to injury with the disfigurement and neon sign baldness that it brings. Things you can hide, things you can't. Things that are a huge drag. Things that draw attention that a person like me and my mother before me hate most.
So I am not sure where I sit on all of this. I'm going to poke around on the web a little bit to see where I want to be in this interim space of booblessness. Speaking of, we are getting some really rad button ideas! Maybe on the next post we will have a sample to consider...I think we may have to vote.
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