"What's my destiny, mama?" -- Forrest Gump
I don't know what mine is, I realized this weekend. I live a lot in the future. I think about what it will be like to be a midwife, or to die. I think about what it will feel like in random scenarios that will likely never happen.
I think it's a fine distraction from what I'm feeling right now, in any given moment. I still don't know how to feel things *right now*, very well, at least.. that's my thought in this moment.
The trip this weekend was a deep, deep river that words will only make shallow, and tidy. I am not ready to write about my trip to the Redwoods and the things that happened, inside me and outside me as well, but I will say a few things -
- I am learning that I intellectualize my feelings a lot as a very effective defense mechanism. This comes up time and time and time again and is a 'hot' issue for me right now. I immediately process why, how, the other side, and I do my very best to skip over the feelings all together.
As a result, this blog is evidence, I feel like I have a lot of feelings about having had cancer that I did not name, or sit with. I don't need to relive the whole thing (or do I? I don't know... that's a good question- is that just going back to my regular defense mechanism? Hmm...) but I want to move forward in better awareness of what I'm feeling and letting that just be. No thinking about it, rationalizing or judging it. There are no 'bad' feelings, just uncomfortable ones- and I know this, and I need to just let myself be uncomfortable more often. Thank you, cancer-teacher.
- There were three mosquitos during my entire trip from Thursday night until 3:30am this morning when I arrived home. Three.
- As I was packing for my trip I was sitting in the front seat of the van and this dark shadow passed over the windshield. I thought, holy moly that was like a movie! I hopped out of the van and looked up and there was a single hawk right above me that was slowly spiraling up, and up, and up. It didn't go wide, it just stayed right there but went higher, and higher. I've never seen a hawk around my house before. There were probably 40 hawks on the trip, we saw hawks constantly.
- Campground (KOA in Crescent City if you care) was absolutely perfect. I was worried when I pulled up by how busy it looked but I had paid for a tent space (no regrets!) and it was totally surrounded by redwoods and huge stumps, so we had privacy and quiet even though the grounds were totally full.
- Serendipity abounded during this trip. I can't even give examples, but all along the way we felt incredibly touched by Spirit and blessed in our journey- everything just consistently worked out even when it seemed like it wouldn't.
That's all I'm saying for now. I'm trying to slip back into the stream of my regular life, at least a little bit, so that I can function. More words later.
Monday, July 30, 2012
Thursday, July 26, 2012
Baseline
I'm working on getting to see my wonderful OB/GYN to start talking about a baseline of information on my ovaries. Every time I think about my ovaries, they get this pinchy sensation that feels like "YES! Me!!" I'm just listening and going to get my team together to make sure that nothing nefarious is going on with those little suckers.
I'm sort of in this middle world where people still are uncomfortable with the whole 'cancer' conversation but we're on ground that feels much safer. It's much easier to talk to someone about cancer when it's not currently growing inside of them, right? I don't have judgments about it, it's just interesting to watch how other people react to my experience (and isn't that all of life, anyway? Having experiences and reacting to them?)
What I don't like, deep inside me, is that when people act sort of relieved that we don't have to have the 'oh that's too bad!' conversation, that I feel like the sum of the experience I had is inconsequential. It's not that I need any one to do anything different, I'd so much rather people are real in their reactions and exchanges with me (fake is awkward.) "Oh, it was just thyroid cancer, well that's good."
I just want to invite people who are reading that if you are uncomfortable in a situation, like meeting someone who has cancer, try asking really broad questions. "How are you feeling about that?" is a pretty good fall back question and I ask it probably daily to people I meet/interface with. Don't assume that just because you think you would feel a certain way about it, that's how I feel- just ask me! When I ask this question, I'm genuinely curious to know their experience, because I'm not trying to cope with mine, in that moment. It's okay to be uncomfortable, it's how we grow.
I am grateful to those folks who encouraged me to just make the call to my GYN, he's a great guy and I know he'll help me figure out a good route to take. I had asked for the CA-125 test and he's not a fan of it, so we're going to get together and talk about some other possible options. I don't think I have cancer, but my mother lost her ovaries at 25 and I really have no idea if any kind of cancer runs in my family- and given the amount of noise my ovaries have made over the course of my life it feels prudent to be on top of it.
Liz asked if I thought I'd need more, and more, and more testing as I go- and I had to really sit with that because I can see where someone might go in that direction. I don't land on 'anxious' about too many things and I feel like if I can check into it now, and if nothing's going on, create a baseline to work from, that's all I really need to do. I'll keep in the loop with my doc and maybe have checks when I have physicals or even annually, but I'm not going to fuss about this and demand scans I don't need and wrack up a bunch of stress and worry.
There is a 5K run that I am thinking I'd like to try to do- it falls two days before I leave for Shanti so I don't know that it's something that's realistic but I've never done anything like this before so what do I know about what's realistic? I know that it's a cause that's important to me (child trafficking) and I've been thinking about how I could realistically get started on an exercise program. Left to my own devices, my old patterns, it will never happen. I'll talk with my friend who is also training right now and see what her advice is.
A lot of stuff around my family relationships is coming up now finally, which is a lot of what I think this whole cancer thing was about- and it's interesting the movements that are happening when I felt very frozen before. All of my life I've felt (and really, been identified) as 'different' to my family. The whole 'black sheep' thing, which is fine- I am different, I live my life a different way, have very different values, whatever. I'm growing okay with that feeling of separation. Due to a lot of things, I also felt like I wasn't important to my family, and I am still working through those feelings. I had gone back and forth wondering if I should continue to try to pursue connection with my family and throwing myself up against this giant wall of expectations and demands without ever telling anyone that my feelings were desperately hurt, that I felt alone, that I was angry and felt abandoned and unimportant to them.
As I was moving through cancer, I started just talking to a few people and that felt exactly right. I was isolating myself, determining how other people felt about me without ever asking them, and while I do try to be as available as I can, life doesn't make it easy for me to be close with anyone in the family, really.
Add to this the intense drama I've been going through with my mother, and how insanely difficult and ridiculous that has been, and I've felt that I didn't get to have a 'family' like some other people do, that I was just going to have to wing this life on my own, pretty much.
I set some good boundaries for myself with regard to my extended family but what I wasn't doing was just reaching out, from one person to another, and sharing heart to heart. Cancer got me talking, I realized that it doesn't have to be all or nothing. I am excited that I get to spend time with cousins that I love SO dearly and who I have really missed in my life. This isn't the end of the story, there is still so much junk to work out and I seriously need some therapy to wade through it all. In the meantime, I can have a place where it's easy- where it's just people who love each other spending time together without it meaning anything more than that - we just dig each other and it's fun to be together so we're doing it. I love it, and it makes my heart really full.
With regard to my mother, I had an intense and empowering conversation with her where I told her that I really need her to fight for me, fight for our relationship. I've been carrying it on my shoulders and taking care of her since I was a little kid and I am done with that- if she wants me in her life, she'll have to fight for me. I'm HER kid, not the other way around. I don't need to set down deadlines, or "You must do this or else" type of ultimatums. I just need her to take risks, be challenged, try hard, and do those things in a direction of wellness, and health, and wholeness, rather than drugs, and destruction, and manipulation. I'm almost 36 years old- I'm over it.
The reason I'm sharing these eensy weensy little windows into these very personal areas of my life are because this is the land that cancer came and tilled up. During that process of having cancer, new ways of seeing, relating, choosing, being- all tilled up from underneath the hard packed earth of my heart that historically, I only knew how to keep stamping my foot on in frustration. Cancer showed me the beauty of what's underneath and it looks an smells so good, I want to keep digging.
I want these fundamental human relationships in my life to just be easier, and for my heart not to hurt quite so much. I want experiences with my family that are delicious, and recent. More than anything, I want to feel seen, and valued, and important to my family, willing to risk things for. I have to continue do that for them, too.
I feel like this is a good start and I'm grateful that I could finally move all this intense energy in a direction that feels healthy and rewarding.
I'm sort of in this middle world where people still are uncomfortable with the whole 'cancer' conversation but we're on ground that feels much safer. It's much easier to talk to someone about cancer when it's not currently growing inside of them, right? I don't have judgments about it, it's just interesting to watch how other people react to my experience (and isn't that all of life, anyway? Having experiences and reacting to them?)
What I don't like, deep inside me, is that when people act sort of relieved that we don't have to have the 'oh that's too bad!' conversation, that I feel like the sum of the experience I had is inconsequential. It's not that I need any one to do anything different, I'd so much rather people are real in their reactions and exchanges with me (fake is awkward.) "Oh, it was just thyroid cancer, well that's good."
I just want to invite people who are reading that if you are uncomfortable in a situation, like meeting someone who has cancer, try asking really broad questions. "How are you feeling about that?" is a pretty good fall back question and I ask it probably daily to people I meet/interface with. Don't assume that just because you think you would feel a certain way about it, that's how I feel- just ask me! When I ask this question, I'm genuinely curious to know their experience, because I'm not trying to cope with mine, in that moment. It's okay to be uncomfortable, it's how we grow.
I am grateful to those folks who encouraged me to just make the call to my GYN, he's a great guy and I know he'll help me figure out a good route to take. I had asked for the CA-125 test and he's not a fan of it, so we're going to get together and talk about some other possible options. I don't think I have cancer, but my mother lost her ovaries at 25 and I really have no idea if any kind of cancer runs in my family- and given the amount of noise my ovaries have made over the course of my life it feels prudent to be on top of it.
Liz asked if I thought I'd need more, and more, and more testing as I go- and I had to really sit with that because I can see where someone might go in that direction. I don't land on 'anxious' about too many things and I feel like if I can check into it now, and if nothing's going on, create a baseline to work from, that's all I really need to do. I'll keep in the loop with my doc and maybe have checks when I have physicals or even annually, but I'm not going to fuss about this and demand scans I don't need and wrack up a bunch of stress and worry.
There is a 5K run that I am thinking I'd like to try to do- it falls two days before I leave for Shanti so I don't know that it's something that's realistic but I've never done anything like this before so what do I know about what's realistic? I know that it's a cause that's important to me (child trafficking) and I've been thinking about how I could realistically get started on an exercise program. Left to my own devices, my old patterns, it will never happen. I'll talk with my friend who is also training right now and see what her advice is.
A lot of stuff around my family relationships is coming up now finally, which is a lot of what I think this whole cancer thing was about- and it's interesting the movements that are happening when I felt very frozen before. All of my life I've felt (and really, been identified) as 'different' to my family. The whole 'black sheep' thing, which is fine- I am different, I live my life a different way, have very different values, whatever. I'm growing okay with that feeling of separation. Due to a lot of things, I also felt like I wasn't important to my family, and I am still working through those feelings. I had gone back and forth wondering if I should continue to try to pursue connection with my family and throwing myself up against this giant wall of expectations and demands without ever telling anyone that my feelings were desperately hurt, that I felt alone, that I was angry and felt abandoned and unimportant to them.
As I was moving through cancer, I started just talking to a few people and that felt exactly right. I was isolating myself, determining how other people felt about me without ever asking them, and while I do try to be as available as I can, life doesn't make it easy for me to be close with anyone in the family, really.
Add to this the intense drama I've been going through with my mother, and how insanely difficult and ridiculous that has been, and I've felt that I didn't get to have a 'family' like some other people do, that I was just going to have to wing this life on my own, pretty much.
I set some good boundaries for myself with regard to my extended family but what I wasn't doing was just reaching out, from one person to another, and sharing heart to heart. Cancer got me talking, I realized that it doesn't have to be all or nothing. I am excited that I get to spend time with cousins that I love SO dearly and who I have really missed in my life. This isn't the end of the story, there is still so much junk to work out and I seriously need some therapy to wade through it all. In the meantime, I can have a place where it's easy- where it's just people who love each other spending time together without it meaning anything more than that - we just dig each other and it's fun to be together so we're doing it. I love it, and it makes my heart really full.
With regard to my mother, I had an intense and empowering conversation with her where I told her that I really need her to fight for me, fight for our relationship. I've been carrying it on my shoulders and taking care of her since I was a little kid and I am done with that- if she wants me in her life, she'll have to fight for me. I'm HER kid, not the other way around. I don't need to set down deadlines, or "You must do this or else" type of ultimatums. I just need her to take risks, be challenged, try hard, and do those things in a direction of wellness, and health, and wholeness, rather than drugs, and destruction, and manipulation. I'm almost 36 years old- I'm over it.
The reason I'm sharing these eensy weensy little windows into these very personal areas of my life are because this is the land that cancer came and tilled up. During that process of having cancer, new ways of seeing, relating, choosing, being- all tilled up from underneath the hard packed earth of my heart that historically, I only knew how to keep stamping my foot on in frustration. Cancer showed me the beauty of what's underneath and it looks an smells so good, I want to keep digging.
I want these fundamental human relationships in my life to just be easier, and for my heart not to hurt quite so much. I want experiences with my family that are delicious, and recent. More than anything, I want to feel seen, and valued, and important to my family, willing to risk things for. I have to continue do that for them, too.
I feel like this is a good start and I'm grateful that I could finally move all this intense energy in a direction that feels healthy and rewarding.
Friday, July 20, 2012
Thunder and lightning.
I haven't written in a bit. I have wanted to, but I'm just working through some stuff. I feel like I'm surrounded right now by this little cloud, and every once in a while this lightning bolt hits me and I scream, "I HAD CANCER!" and then the thunder rolls over me and I fall to the ground because I'm still all smoky and shocked.
I'm still shocked.
Suddenly the crisis part is over and I am left singed and changed. I am still absolutely shocked that I had cancer, and saying it doesn't diminish the power of it. I've been saying it for weeks. I feel it very differently today than I did when this started.
I really thought that with my first blog post that I'd be able to keep this light and funny, that I'd show that cancer doesn't have to be terrible. I actually think I have done that, and not because I kept to my intention but because it truly wasn't terrible.
But in some ways, it's utterly terrible. Utterly, deeply terrible. I think that's finally hitting me now, that I'm 'safe', on the other side of it. I can safely freak out because I don't have to focus now on getting through another test, or worrying about test results. Now there's all this left over room inside me and what I'm discovering is filling those little divots is shock, and ... I don't know the other words yet.
I worry about my ovaries and I want to just be tested now for cancer. My whole pelvis carries my trauma and stress (when I get stressed, my whole pelvis clenches up, for example). I don't like to be touched, my pelvis is often sore or wonky - it's just where I hold things. (Which makes sense, it's the cradle of life!)
My womanly bits all live within my pelvis and I've had a lot of problem with it since I was 15 years old. I won't get all into it given the mixed nature of this audience but I had a benign tumor removed from my right ovary in 2002. Now I've had cancer, and I'm doubly scared that maybe something is down there that I just don't know about. Sometimes being well tuned in to your body is difficult, it would be nice to have some silence now and then. I am not a hypochondriac, I don't worry unnecessarily that I'm sick or dying or whatever - but this feels really important and serious to me and it adds to the shock of "Holy shit, I had CANCER." Real, actual cancer. Not 'pre-cancer'. Not "could become cancer". Not "a chance of cancer". Actual cancer, inside me, Kristina, ME.
I'm still shocked.
Now I get to figure out who I am as someone who has "had" cancer. I want to go to my GYN and ask him for a blood test for cancer because then at least I can breathe for a while. How do I ask for that? How do I convince him? I have no doubt that I really need to do this for myself, for my piece of mind, and I feel like a damn crazy person, I feel like it doesn't make sense to anyone but me which makes me feel like it shouldn't make sense to me at all.
I feel like I've just broken up with someone and keep finding their goddamn crap all over my house.
I'm still shocked.
Suddenly the crisis part is over and I am left singed and changed. I am still absolutely shocked that I had cancer, and saying it doesn't diminish the power of it. I've been saying it for weeks. I feel it very differently today than I did when this started.
I really thought that with my first blog post that I'd be able to keep this light and funny, that I'd show that cancer doesn't have to be terrible. I actually think I have done that, and not because I kept to my intention but because it truly wasn't terrible.
But in some ways, it's utterly terrible. Utterly, deeply terrible. I think that's finally hitting me now, that I'm 'safe', on the other side of it. I can safely freak out because I don't have to focus now on getting through another test, or worrying about test results. Now there's all this left over room inside me and what I'm discovering is filling those little divots is shock, and ... I don't know the other words yet.
I worry about my ovaries and I want to just be tested now for cancer. My whole pelvis carries my trauma and stress (when I get stressed, my whole pelvis clenches up, for example). I don't like to be touched, my pelvis is often sore or wonky - it's just where I hold things. (Which makes sense, it's the cradle of life!)
My womanly bits all live within my pelvis and I've had a lot of problem with it since I was 15 years old. I won't get all into it given the mixed nature of this audience but I had a benign tumor removed from my right ovary in 2002. Now I've had cancer, and I'm doubly scared that maybe something is down there that I just don't know about. Sometimes being well tuned in to your body is difficult, it would be nice to have some silence now and then. I am not a hypochondriac, I don't worry unnecessarily that I'm sick or dying or whatever - but this feels really important and serious to me and it adds to the shock of "Holy shit, I had CANCER." Real, actual cancer. Not 'pre-cancer'. Not "could become cancer". Not "a chance of cancer". Actual cancer, inside me, Kristina, ME.
I'm still shocked.
Now I get to figure out who I am as someone who has "had" cancer. I want to go to my GYN and ask him for a blood test for cancer because then at least I can breathe for a while. How do I ask for that? How do I convince him? I have no doubt that I really need to do this for myself, for my piece of mind, and I feel like a damn crazy person, I feel like it doesn't make sense to anyone but me which makes me feel like it shouldn't make sense to me at all.
I feel like I've just broken up with someone and keep finding their goddamn crap all over my house.
Sunday, July 15, 2012
Death
I'd say that I'm feeling better every day, even still. I don't know what it's taking me so long to recover from but I do not feel yet that I'm at 100% - which is okay, because the progress continues to be steady. I'm not down about it, I am grateful that I have a body that likes healing.
The next thing I need to do is get blood work done so that I can see what my thyroid levels are, calcium and Vitamin D while I'm at it. I'm starting to struggle with the daily routine of taking pills- I'm definitely at that point where the novelty of a new routine wears off and the old habits start to show themselves. I need to keep my medication out where I walk past it/see it, otherwise I never even think about it. I missed one dose so far, and was late on another, but I can feel the disconnect and I know that I'm likely to keep forgetting if I don't take some measures to make sure that I'm reminded daily.
I feel like my levels are good for the most part. I am still pretty tired but I think if I can start going to bed at a decent hour every now and then it might really help. I want to start integrating some kind of regular, low impact exercise without making a big fuss about it- just start doing something and see where it goes. No goals, just having it actually happen will be enough of a success. It feels like it's really important to make this happen and I hope that I am relaxed enough to let myself do it and enjoy it, but on top of it enough to stick it out. I guess I need to make some daily-routine changes all around.
I've said many times that this cancer is energetic- I do believe this, that it wasn't here to kill me necessarily, but more serve as a warning system that I need to open up, pay attention, speak up and make some changes.
It's just been such an intense few months and the last couple of days I've felt the culmination of all of that intense outpouring of energy, of being cornered by circumstances into receiving generous love from others in ways I never would have allowed myself otherwise - and the energetic transition is just starting to wear me down or something. Today I dont' want to be touched and I'm prickly, a little sad and disconnected, but at the same time feeling really positive and I actually got a LOT of work done today. It's a weird place to be, all conflicted and turned upside down, but it's just where I'm at.
Today Randy and I were listening to NPR and the Tobolowsky Files were on, and Stephen Tobolowsky was talking about his experience with his heart surgery. He painted the exact picture in his story of what it felt like to be me, going through cancer and surgery and healing and everything that we have so far. It was a profound thing to listen to, that other people do go about this journey in many of the same ways that I do- in consciousness that this changes us, that it changes our bodies profoundly, forever, that it changes how we love ourselves and others, and what we say about that love. My friend Kelli had a laparoscopy and it was also profoundly life changing for her- a 'little' surgery, but it cuts us each to the meat and bones of who we really are and makes us naked in ways we'd never expect (because we are willing to be naked).
I felt like I was holding Stephen's hand as he told his story, getting obviously emotional as he described his wife and her support of him, much in the same way that Randy has unwaveringly supported me. "We'll do whatever we have to do. We'll get through this." It's true. We will.
He talked about a story in the Talmud about how Death visits us many times in our lives and we don't notice until He's finally staring us in the face- and then we realize that we've done this dance before, in some moment when we might have lost our lives to that car accident, or illness.
What I think we as a culture don't know is that Death is with us in other ways too- when we change, never to go back to who we were. When I moved out of my mother's crazy house and in with my Aunt. When I moved to Germany, when I came home. When I had my first child. When I had my cesarean, when I had cancer- all of these, they are all deaths- because I died in each of those moments, shed that molty flaky skin of who I was, and I birthed myself again, new and shiny and pink, and in that, also delicate and easily bruised for a while.
I feel like I am still in the 'death' phase of this, that parts of me are still shedding away and peeling back. I feel like I am still between the lines, between the veils of life and Spirit. I don't feel like my feet are on the ground yet and I'm not sure I'll know they are when I finally land.
It's frustrating, and delicious, and perfect.
The next thing I need to do is get blood work done so that I can see what my thyroid levels are, calcium and Vitamin D while I'm at it. I'm starting to struggle with the daily routine of taking pills- I'm definitely at that point where the novelty of a new routine wears off and the old habits start to show themselves. I need to keep my medication out where I walk past it/see it, otherwise I never even think about it. I missed one dose so far, and was late on another, but I can feel the disconnect and I know that I'm likely to keep forgetting if I don't take some measures to make sure that I'm reminded daily.
I feel like my levels are good for the most part. I am still pretty tired but I think if I can start going to bed at a decent hour every now and then it might really help. I want to start integrating some kind of regular, low impact exercise without making a big fuss about it- just start doing something and see where it goes. No goals, just having it actually happen will be enough of a success. It feels like it's really important to make this happen and I hope that I am relaxed enough to let myself do it and enjoy it, but on top of it enough to stick it out. I guess I need to make some daily-routine changes all around.
I've said many times that this cancer is energetic- I do believe this, that it wasn't here to kill me necessarily, but more serve as a warning system that I need to open up, pay attention, speak up and make some changes.
It's just been such an intense few months and the last couple of days I've felt the culmination of all of that intense outpouring of energy, of being cornered by circumstances into receiving generous love from others in ways I never would have allowed myself otherwise - and the energetic transition is just starting to wear me down or something. Today I dont' want to be touched and I'm prickly, a little sad and disconnected, but at the same time feeling really positive and I actually got a LOT of work done today. It's a weird place to be, all conflicted and turned upside down, but it's just where I'm at.
Today Randy and I were listening to NPR and the Tobolowsky Files were on, and Stephen Tobolowsky was talking about his experience with his heart surgery. He painted the exact picture in his story of what it felt like to be me, going through cancer and surgery and healing and everything that we have so far. It was a profound thing to listen to, that other people do go about this journey in many of the same ways that I do- in consciousness that this changes us, that it changes our bodies profoundly, forever, that it changes how we love ourselves and others, and what we say about that love. My friend Kelli had a laparoscopy and it was also profoundly life changing for her- a 'little' surgery, but it cuts us each to the meat and bones of who we really are and makes us naked in ways we'd never expect (because we are willing to be naked).
I felt like I was holding Stephen's hand as he told his story, getting obviously emotional as he described his wife and her support of him, much in the same way that Randy has unwaveringly supported me. "We'll do whatever we have to do. We'll get through this." It's true. We will.
He talked about a story in the Talmud about how Death visits us many times in our lives and we don't notice until He's finally staring us in the face- and then we realize that we've done this dance before, in some moment when we might have lost our lives to that car accident, or illness.
What I think we as a culture don't know is that Death is with us in other ways too- when we change, never to go back to who we were. When I moved out of my mother's crazy house and in with my Aunt. When I moved to Germany, when I came home. When I had my first child. When I had my cesarean, when I had cancer- all of these, they are all deaths- because I died in each of those moments, shed that molty flaky skin of who I was, and I birthed myself again, new and shiny and pink, and in that, also delicate and easily bruised for a while.
I feel like I am still in the 'death' phase of this, that parts of me are still shedding away and peeling back. I feel like I am still between the lines, between the veils of life and Spirit. I don't feel like my feet are on the ground yet and I'm not sure I'll know they are when I finally land.
It's frustrating, and delicious, and perfect.
Saturday, July 14, 2012
Knocked down
I'm feeling a little bit knocked down, and pulled apart. It just seems like I'm moving from one intense thing to another and it all started on February 17th when I saw that little tumor on my ultrasound screen. It doesn't even matter what all of these things are, but yesterday it just really hit me that it's been intense, dude. Intense.
I don't even know what to say. I feel like I'm molting. Old, dead, flaky me is falling away, and new skin is emerging. I feel resistant about this, and it's going to happen anyway. /sigh
Last night on my way home I parked and watched lightning strike every 3-5 seconds for about 10 minutes before I drove the rest of the way home. It was so beautiful, the lightning was striking behind the clouds so you couldn't see the bolts, but it back-lit the beautiful clouds in this incredible way. I feel the same way, that the strikes in my life are not something you'd see on the surface but that in some way I am revealed by them in a way I'd never expect.
The trees are calling- my trip to the Redwoods is coming up and I can think of no better place to go, rest, Medicine Walk, and feel the ground beneath my feet again.
I don't even know what to say. I feel like I'm molting. Old, dead, flaky me is falling away, and new skin is emerging. I feel resistant about this, and it's going to happen anyway. /sigh
Last night on my way home I parked and watched lightning strike every 3-5 seconds for about 10 minutes before I drove the rest of the way home. It was so beautiful, the lightning was striking behind the clouds so you couldn't see the bolts, but it back-lit the beautiful clouds in this incredible way. I feel the same way, that the strikes in my life are not something you'd see on the surface but that in some way I am revealed by them in a way I'd never expect.
The trees are calling- my trip to the Redwoods is coming up and I can think of no better place to go, rest, Medicine Walk, and feel the ground beneath my feet again.
Thursday, July 12, 2012
Still in the ripples
The times that it pops up are rather infrequent now, which is nice in some ways- long periods of peace, of life just going on. Then suddenly I see something that reminds me that I had cancer.
I didn't expect to still be grieving this loss after being cured. It makes me wonder if I really grieved it when it was happening but I know (and have documented) that I was as in the moment as I could humanly be, all along the way. I never side stepped it, or shoved it down, or pretended I was okay when I wasn't - so that means that this is just the normal for me to process that I had cancer.
Last night I was reading a story where a teenage girl falls in love- and in the middle of her love story she finds out that her mom is battling to manage lung cancer that is no longer treatable. The story isn't a spectacular thriller, I read the whole thing in one day. It was a sweet love story that was just fun to read, but this particular part of the story was particularly difficult because I had to tell my kids that I had cancer. I went in thinking that it would change their world forever, and who knows- maybe it did. I didn't know what to expect from them but I was prepared for a lot of tears, fear and sadness. I didn't get it, which is great- truly, truly great, but when you have that moment ahead of you, it's scary and overwhelming. So as I'm reading about this mother telling her passionate, head strong daughter that she was going to die of lung cancer, it hit me deeply that I shared something powerful with her and with anyone else who has had to break the news of a serious illness to people they love. I sat in the bathtub and read the story and cried my eyeliner right off my face.
I didn't give it a lot of thought, I had cancer, dude, it's sure to pop up, right? I figured it's just part of the process and forgot about it. I had a great, busy day with friends and thai food, my family and delicious birthday barbecue dinner for my husband. We went to the store after dinner and a woman walked by with a scarf on her bald head and this huge lump formed in my stomach, and I smiled at her realizing that she has no idea that I know some piece of what she's going through, even if small- and then it really hit me - I had cancer, dude. Cancer!
I walked around for 35 years thinking that it was something that could happen, but probably wouldn't happen, to me. It actually really happened. I had a surgery and procedures, I had to worry about my death. I had to tell my kids, I had to surrender to the help of my friends.
There's no way to type it out on a screen and be able to translate the exquisite, acute experience that this has been. I think on some level I am still in shock- especially after it is over so quickly. I don't feel relieved yet as much as I do feel like I'm still trying to organize the whole experience in the file cabinet of my mind, my life. Where does this weird folder fit?
I didn't expect to still be grieving this loss after being cured. It makes me wonder if I really grieved it when it was happening but I know (and have documented) that I was as in the moment as I could humanly be, all along the way. I never side stepped it, or shoved it down, or pretended I was okay when I wasn't - so that means that this is just the normal for me to process that I had cancer.
Last night I was reading a story where a teenage girl falls in love- and in the middle of her love story she finds out that her mom is battling to manage lung cancer that is no longer treatable. The story isn't a spectacular thriller, I read the whole thing in one day. It was a sweet love story that was just fun to read, but this particular part of the story was particularly difficult because I had to tell my kids that I had cancer. I went in thinking that it would change their world forever, and who knows- maybe it did. I didn't know what to expect from them but I was prepared for a lot of tears, fear and sadness. I didn't get it, which is great- truly, truly great, but when you have that moment ahead of you, it's scary and overwhelming. So as I'm reading about this mother telling her passionate, head strong daughter that she was going to die of lung cancer, it hit me deeply that I shared something powerful with her and with anyone else who has had to break the news of a serious illness to people they love. I sat in the bathtub and read the story and cried my eyeliner right off my face.
I didn't give it a lot of thought, I had cancer, dude, it's sure to pop up, right? I figured it's just part of the process and forgot about it. I had a great, busy day with friends and thai food, my family and delicious birthday barbecue dinner for my husband. We went to the store after dinner and a woman walked by with a scarf on her bald head and this huge lump formed in my stomach, and I smiled at her realizing that she has no idea that I know some piece of what she's going through, even if small- and then it really hit me - I had cancer, dude. Cancer!
I walked around for 35 years thinking that it was something that could happen, but probably wouldn't happen, to me. It actually really happened. I had a surgery and procedures, I had to worry about my death. I had to tell my kids, I had to surrender to the help of my friends.
There's no way to type it out on a screen and be able to translate the exquisite, acute experience that this has been. I think on some level I am still in shock- especially after it is over so quickly. I don't feel relieved yet as much as I do feel like I'm still trying to organize the whole experience in the file cabinet of my mind, my life. Where does this weird folder fit?
Wednesday, July 11, 2012
Post-op appointment
What a wild day, for many reasons. My post-op appointment was supposed to be the major event for the day, and turns out it was the most mundane thing that happened today.
Let me get to it.
We met with Dr. Harper today for my post-op. I really do like her a lot, I wish we had more occasion to work together besides her desire to cut people's body open and my desire to stay intact. We just chatted a bit about our experiences since the surgery and outlined a few areas where things could have gone better. She said she'd talk with the people involved herself and make some adjustments- that's just what you want to hear when you have valid issues, you want to hear there is going to be action!
She was really positive about my healing, and said that my calcium levels in the ER would have been normal or they'd have alerted us to them. I had reviewed my lab values myself and they were all within normal ranges, so my parathyroids must be healing nicely and doing their job! We have some new labs ordered to see how I'm adjusting to my medication and how my Vitamin D is doing now that I'm taking it more often, I'll do those before I leave for the Redwoods.
She was surprised to hear my voice still sounding so high, and hoarse, and to hear that I'm still having 'breathy' issues. I run out of breath while talking, I get winded very fast, etc. This is all due to a probably paralyzed or sluggish vocal cord. She said to give it a month from now and if it's not better, that she'd refer me to an ENT (Ear-Nose-Throat) doc and we'd talk about possible treatments, the most fun one being to put me asleep and inject some kind of stuff into my paralyzed cord to bring it back to a normal size/whatever so it would function properly. Oooh. That sounds fun.
Tonight I thought, hey, would I rather have a needle down my throat or radiation? I'll take a needle in my throat, thank you.
I was thinking about the pre-op photo I took of my neck, and how I was very in the moment with my feelings, and acknowledging that I would never look the same. I am still trying to get used to this scar, and what it does to my neck. I was at a farmer's market recently and a kid straight up asked me, "Did you have surgery?"I was really glad he asked me so directly and we could just talk, rather than having him stare at my neck like I was Frankenstein's daughter or something. I plan to concoct some kind of awesome story to explain my scar. So far all I've got is, "I was in a knife fight and someone stole my thyroid." It's cool, but doesn't have enough.. I don't know... panache. I'm accepting ideas. ;)
I think in some ways this whole cancer thing is still hitting me. It started and ended so fast, I sometimes still think to myself, "Holy crap, I had CANCER." Cancer? Seriously? *ME?* How in the world did that even happen?
Randy and I were talking today about how I fought cancer and won. I admitted that I don't feel like I did anything more than what was required of me to survive. You get hungry, you eat. You get cancer, you get treatment. Done, and done. It didn't require a whole lot of mental acrobatics to understand my treatment, I just had to do it. It was hard, harder than anyone told me it would be- but it wasn't a fight, it was more like a surrender. I had to surrender to having cancer so that I could survive it, if that makes sense. I had to let go of expectations about what my life was going to be, and accept a new reality, and give in to what was scary and hard. By surrendering, I won the fight. Weird, but that's how it's done I guess.
Let me get to it.
We met with Dr. Harper today for my post-op. I really do like her a lot, I wish we had more occasion to work together besides her desire to cut people's body open and my desire to stay intact. We just chatted a bit about our experiences since the surgery and outlined a few areas where things could have gone better. She said she'd talk with the people involved herself and make some adjustments- that's just what you want to hear when you have valid issues, you want to hear there is going to be action!
She was really positive about my healing, and said that my calcium levels in the ER would have been normal or they'd have alerted us to them. I had reviewed my lab values myself and they were all within normal ranges, so my parathyroids must be healing nicely and doing their job! We have some new labs ordered to see how I'm adjusting to my medication and how my Vitamin D is doing now that I'm taking it more often, I'll do those before I leave for the Redwoods.
She was surprised to hear my voice still sounding so high, and hoarse, and to hear that I'm still having 'breathy' issues. I run out of breath while talking, I get winded very fast, etc. This is all due to a probably paralyzed or sluggish vocal cord. She said to give it a month from now and if it's not better, that she'd refer me to an ENT (Ear-Nose-Throat) doc and we'd talk about possible treatments, the most fun one being to put me asleep and inject some kind of stuff into my paralyzed cord to bring it back to a normal size/whatever so it would function properly. Oooh. That sounds fun.
Tonight I thought, hey, would I rather have a needle down my throat or radiation? I'll take a needle in my throat, thank you.
I was thinking about the pre-op photo I took of my neck, and how I was very in the moment with my feelings, and acknowledging that I would never look the same. I am still trying to get used to this scar, and what it does to my neck. I was at a farmer's market recently and a kid straight up asked me, "Did you have surgery?"I was really glad he asked me so directly and we could just talk, rather than having him stare at my neck like I was Frankenstein's daughter or something. I plan to concoct some kind of awesome story to explain my scar. So far all I've got is, "I was in a knife fight and someone stole my thyroid." It's cool, but doesn't have enough.. I don't know... panache. I'm accepting ideas. ;)
I think in some ways this whole cancer thing is still hitting me. It started and ended so fast, I sometimes still think to myself, "Holy crap, I had CANCER." Cancer? Seriously? *ME?* How in the world did that even happen?
Randy and I were talking today about how I fought cancer and won. I admitted that I don't feel like I did anything more than what was required of me to survive. You get hungry, you eat. You get cancer, you get treatment. Done, and done. It didn't require a whole lot of mental acrobatics to understand my treatment, I just had to do it. It was hard, harder than anyone told me it would be- but it wasn't a fight, it was more like a surrender. I had to surrender to having cancer so that I could survive it, if that makes sense. I had to let go of expectations about what my life was going to be, and accept a new reality, and give in to what was scary and hard. By surrendering, I won the fight. Weird, but that's how it's done I guess.
Monday, July 9, 2012
Gratitude
I'm feeling recovered from my fever for the most part- I am pretty pooped right now and I don't know if it's from my surgery recovery, which come on, should be well behind me now, or recovering from the intense fever I had, or what.
I still run out of breath so fast and I don't know what that's about, if it's normal or what. I need to go to Seattle on Wednesday for my post-op appointment so it's one of the things I'll be asking about for sure. My voice is still making steady, albeit slow progress every day. I sound more like myself today than I did yesterday, especially if I keep my yap shut for an hour or two before I talk.
This morning I woke up to no kids in the house, husband gone to work - just me and my cat, waking up together in the morning sun. I had this burst of inspiration to go shopping so I did, which is something I don't do often as I'm generally struggling to feel successful in what I purchase. Today I tried on seven things, and I bought all seven things. Dude, that's a 100% success rate!
While I was driving around doing my errands I just had this sudden realization that I am free from the heaviest burden of cancer - getting treated, pursuing being cured of it. My fever is over and today, I felt good, alive, breathing, free of stress. I realized that I hadn't felt *contentment* in a long time. I haven't felt the feeling of just being satisfied with what I am, who I am, what I have, what my life is- in a while.
I think that feeling was tucked away as soon as I knew that I could possibly have cancer, which started on February 17th when the ultrasound tech left the image of my thyroid up on the screen as she went to review my films with the radiologist, and I saw that little nugget of mystery staring at me.
I generally feel content with my life. I have amazing, inspiring relationships with my friends, with my kids and husband and the people I work with. Deep rivers of love run through my life. I don't want for much at all in any deep way. I have what I need and crave.
Suddenly though, I was distracted by this little detour my life seemed to be taking and rather than controlling my life, rather than choosing for myself where I wanted to focus, I had to let go of things that I love doing. I had to think about giving up things that I was planning for the future. I had to imagine my death, rather than my long life.
There is no contentment in that place, at least, there wasn't for me. I'm sure there could have been, if I'd realized it and worked to get to that frame of mind, but it wasn't on my radar in the moment. Today when it hit me that I am indeed content, I felt a tremendous gratitude wash over me. I get to live, at least today! I get to imagine my future again the way I want, rather than having to make more sacrifices for something that I never wanted to accomodate.
It is a relief to be awash in gratitude, and contentment.
I still run out of breath so fast and I don't know what that's about, if it's normal or what. I need to go to Seattle on Wednesday for my post-op appointment so it's one of the things I'll be asking about for sure. My voice is still making steady, albeit slow progress every day. I sound more like myself today than I did yesterday, especially if I keep my yap shut for an hour or two before I talk.
This morning I woke up to no kids in the house, husband gone to work - just me and my cat, waking up together in the morning sun. I had this burst of inspiration to go shopping so I did, which is something I don't do often as I'm generally struggling to feel successful in what I purchase. Today I tried on seven things, and I bought all seven things. Dude, that's a 100% success rate!
While I was driving around doing my errands I just had this sudden realization that I am free from the heaviest burden of cancer - getting treated, pursuing being cured of it. My fever is over and today, I felt good, alive, breathing, free of stress. I realized that I hadn't felt *contentment* in a long time. I haven't felt the feeling of just being satisfied with what I am, who I am, what I have, what my life is- in a while.
I think that feeling was tucked away as soon as I knew that I could possibly have cancer, which started on February 17th when the ultrasound tech left the image of my thyroid up on the screen as she went to review my films with the radiologist, and I saw that little nugget of mystery staring at me.
I generally feel content with my life. I have amazing, inspiring relationships with my friends, with my kids and husband and the people I work with. Deep rivers of love run through my life. I don't want for much at all in any deep way. I have what I need and crave.
Suddenly though, I was distracted by this little detour my life seemed to be taking and rather than controlling my life, rather than choosing for myself where I wanted to focus, I had to let go of things that I love doing. I had to think about giving up things that I was planning for the future. I had to imagine my death, rather than my long life.
There is no contentment in that place, at least, there wasn't for me. I'm sure there could have been, if I'd realized it and worked to get to that frame of mind, but it wasn't on my radar in the moment. Today when it hit me that I am indeed content, I felt a tremendous gratitude wash over me. I get to live, at least today! I get to imagine my future again the way I want, rather than having to make more sacrifices for something that I never wanted to accomodate.
It is a relief to be awash in gratitude, and contentment.
Sunday, July 8, 2012
Secret Club
I'm still adjusting to this new regimin of taking drugs every day. In the past I would have lofty goals of taking vitamins daily and it would last for a couple of weeks and then I'd skip one day and then that was it- done. Thyroid replacement is something I have to take every day- it won't hurt me if I skip one or two days, but why put any stress on my body when it's 100% in my control? So every morning I take my pill and calcium, and now will add Vitamin D to my daily routine as well. That should make my family practice doc happy, she's been bugging me about my Vitamin D level for a couple of years now.
Yesterday I woke up at 5:30 and I had a little bit of a chill, and I just knew I had a fever. I went back to sleep for an hour and when I woke up again (stupid fever sleep!) I took my temperature and sure enough- 99.5. I was a little bewildered, I felt totally fine otherwise. I ended up not getting to do henna at the event I was scheduled for yesterday which is always such a huge disappointment, but I was grateful to be able to make that choice and just stay in bed. Through the day I was quite tired and the fever was getting higher. Randy and I took a nap and when I woke up it was 102.5 and I was weak and sore and kind of out of it. We went to Urgent Care because of the fever combined with a recent surgery- just to be safe, and they sent us to the ER.
Great, the ER! Well the short story is that they don't know why I have a fever. My tests are all normal and happy, and I feel totally fine otherwise. I have an appetite, I'm going to the bathroom just fine - I'm just tired with a fever. Odd.
In the course of my tests I had to have a chest x-ray. After you have cancer, x-rays take on a whole new meaning. Suddenly I just felt very nervous and wanted to say no. The tech who was assisting me was walking me into the room when I said, "I just had cancer, I'm scared to have an x-ray." He looked at my neck and said, "What kind did you have?" I told him, papillary carcinoma with follicular variant.
He pulled down the front of his shirt to show me his scar - Hurthle cell carcinoma. He was so warm and kind and we talked about his radiation treatments and what I went through as far as my treatment. There was no comparison- "I had it worse than you!", it was just two people on a similar journey telling our stories. He had cancer and he did x-rays on people all day. It just made me feel better about having it done and as we walked down the hallway, slowly so we could keep talking, I felt.... relieved? I felt connected to someone who knew what it was like to have this particular experience (in his own way). I wanted to hug him. I felt like I had just been invited to join a secret club of survivors, rather than sort of winging it out here on my own, at the edges of a community that I really don't understand.
I never had thyroid issues, so I'm not educated about this world. I don't want to become an expert on my thyroid/drugs/etc. unless I have to, and right now, I don't have to. Being able to talk to someone about my experience, rather than my lab results, was very healing for me, and the man was a ray of light. Another angel in my path! Nothing can replace the human connection - especially not the internet.
Yesterday I woke up at 5:30 and I had a little bit of a chill, and I just knew I had a fever. I went back to sleep for an hour and when I woke up again (stupid fever sleep!) I took my temperature and sure enough- 99.5. I was a little bewildered, I felt totally fine otherwise. I ended up not getting to do henna at the event I was scheduled for yesterday which is always such a huge disappointment, but I was grateful to be able to make that choice and just stay in bed. Through the day I was quite tired and the fever was getting higher. Randy and I took a nap and when I woke up it was 102.5 and I was weak and sore and kind of out of it. We went to Urgent Care because of the fever combined with a recent surgery- just to be safe, and they sent us to the ER.
Great, the ER! Well the short story is that they don't know why I have a fever. My tests are all normal and happy, and I feel totally fine otherwise. I have an appetite, I'm going to the bathroom just fine - I'm just tired with a fever. Odd.
In the course of my tests I had to have a chest x-ray. After you have cancer, x-rays take on a whole new meaning. Suddenly I just felt very nervous and wanted to say no. The tech who was assisting me was walking me into the room when I said, "I just had cancer, I'm scared to have an x-ray." He looked at my neck and said, "What kind did you have?" I told him, papillary carcinoma with follicular variant.
He pulled down the front of his shirt to show me his scar - Hurthle cell carcinoma. He was so warm and kind and we talked about his radiation treatments and what I went through as far as my treatment. There was no comparison- "I had it worse than you!", it was just two people on a similar journey telling our stories. He had cancer and he did x-rays on people all day. It just made me feel better about having it done and as we walked down the hallway, slowly so we could keep talking, I felt.... relieved? I felt connected to someone who knew what it was like to have this particular experience (in his own way). I wanted to hug him. I felt like I had just been invited to join a secret club of survivors, rather than sort of winging it out here on my own, at the edges of a community that I really don't understand.
I never had thyroid issues, so I'm not educated about this world. I don't want to become an expert on my thyroid/drugs/etc. unless I have to, and right now, I don't have to. Being able to talk to someone about my experience, rather than my lab results, was very healing for me, and the man was a ray of light. Another angel in my path! Nothing can replace the human connection - especially not the internet.
Thursday, July 5, 2012
Hindsight
I did want to just talk again about the perceptions I gained from other people who have gone through this surgery and what my experience has actually been like.
I knew there was a range of rebound time- everyone heals at a different rate of speed. What was very comforting to me before I had the surgery turned out to be one of my biggest frustrations because I made decisions based on the story that other people experienced this surgery, by and large, as pretty darn easy.
In some ways I can see that- I'm not hobbled from a knee surgery, I wasn't denied food like with an abdominal surgery. I am not limited in range of motion from a limb or back surgery. In those respects, if I had to compare, then yes, this was a quite easy surgery.
If I had to tell someone who has only had very limited or no surgical experiences what to expect, I would not have been so quick to be so reassuring- not because I am cruel, but because I just don't think it's realistic and honest. There is more to healing than whether you can drive your car and go back to work. Maybe that's not true for everyone? It is very true for me. I feel like I have stepped off of a rocky ship onto new land that is relatively familiar but just different enough that I keep wondering if I really did land somewhere other than home.
We were told by the person scheduling our surgery that our surgeon felt that if we had the surgery on Friday, Randy should be able to comfortably go out of town on the following Tuesday. We made our decision to have the surgery when we did based on that information, largely, or we would have waited until later after Randy's trip and he was able to be home with me for the initial recovery period (the first week?)
If I hadn't had the incredible support of my friends, I honestly do not know what I would have done. I couldn't cook. I had to sleep very still, sitting up, and I was terribly constipated. My range of motion was limited and I was taking 400mg of ibuprofen every 4 hours around the clock, without fail, to manage pain. I couldn't talk, I couldn't get my brains together to think through simple things, and I ran out of energy very fast.
My friends brought me fully cooked meals with all the fixins, they took Eidie so that I could rest. My older kids did a really good job of working together, of taking care of Eidie, and of facing disappointment when things we thought we'd be able to do didn't pan out without complaining too much. There are no better friends on this planet than the ones I have.
I'm now almost two weeks post surgery and I still tire quickly and get sore. I don't need pain medication anymore except for sporadically. I've adjusted to my medication so far pretty well and I'm feeling happy about that, and I'm also still working to remember to take it every day. (So far, I haven't forgotten for more than an hour or two!)
If I had a job, I could probably go back to work within the last couple of days, but not earlier than that. I will be working this weekend, doing henna at a festival, and I'm nervous that I am pushing this too soon but I also really want to see for myself if I'm ready to do it or not. Nothing says I can't pack up and leave if I get too tired. This big fat scar on my neck will afford me a little slack if I need it, I'm sure.
Last night I posted on Facebook about feeling like the surgeon took out a part of my brain and people shared that after having general anesthesia that it took weeks for them to feel like their faculties were fully returned. Why didn't I know this before hand?
I wish the anesthesiologist had met with me at any length before the surgery to tell me these things. Other than waking up and how that might feel, I had no idea that I might feel tired and foggy for days, weeks after my surgery.
In the moment I thought I had pretty good informed consent happening, and in retrospect I can see where a lot more could have been explained to me very simply.
Over all, I'm definitely getting better every day, and that is great! I feel like the core of my body is strong and eager to heal, and that there are reasons why it's going slowly that I have yet to uncover.
I knew there was a range of rebound time- everyone heals at a different rate of speed. What was very comforting to me before I had the surgery turned out to be one of my biggest frustrations because I made decisions based on the story that other people experienced this surgery, by and large, as pretty darn easy.
In some ways I can see that- I'm not hobbled from a knee surgery, I wasn't denied food like with an abdominal surgery. I am not limited in range of motion from a limb or back surgery. In those respects, if I had to compare, then yes, this was a quite easy surgery.
If I had to tell someone who has only had very limited or no surgical experiences what to expect, I would not have been so quick to be so reassuring- not because I am cruel, but because I just don't think it's realistic and honest. There is more to healing than whether you can drive your car and go back to work. Maybe that's not true for everyone? It is very true for me. I feel like I have stepped off of a rocky ship onto new land that is relatively familiar but just different enough that I keep wondering if I really did land somewhere other than home.
We were told by the person scheduling our surgery that our surgeon felt that if we had the surgery on Friday, Randy should be able to comfortably go out of town on the following Tuesday. We made our decision to have the surgery when we did based on that information, largely, or we would have waited until later after Randy's trip and he was able to be home with me for the initial recovery period (the first week?)
If I hadn't had the incredible support of my friends, I honestly do not know what I would have done. I couldn't cook. I had to sleep very still, sitting up, and I was terribly constipated. My range of motion was limited and I was taking 400mg of ibuprofen every 4 hours around the clock, without fail, to manage pain. I couldn't talk, I couldn't get my brains together to think through simple things, and I ran out of energy very fast.
My friends brought me fully cooked meals with all the fixins, they took Eidie so that I could rest. My older kids did a really good job of working together, of taking care of Eidie, and of facing disappointment when things we thought we'd be able to do didn't pan out without complaining too much. There are no better friends on this planet than the ones I have.
I'm now almost two weeks post surgery and I still tire quickly and get sore. I don't need pain medication anymore except for sporadically. I've adjusted to my medication so far pretty well and I'm feeling happy about that, and I'm also still working to remember to take it every day. (So far, I haven't forgotten for more than an hour or two!)
If I had a job, I could probably go back to work within the last couple of days, but not earlier than that. I will be working this weekend, doing henna at a festival, and I'm nervous that I am pushing this too soon but I also really want to see for myself if I'm ready to do it or not. Nothing says I can't pack up and leave if I get too tired. This big fat scar on my neck will afford me a little slack if I need it, I'm sure.
Last night I posted on Facebook about feeling like the surgeon took out a part of my brain and people shared that after having general anesthesia that it took weeks for them to feel like their faculties were fully returned. Why didn't I know this before hand?
I wish the anesthesiologist had met with me at any length before the surgery to tell me these things. Other than waking up and how that might feel, I had no idea that I might feel tired and foggy for days, weeks after my surgery.
In the moment I thought I had pretty good informed consent happening, and in retrospect I can see where a lot more could have been explained to me very simply.
Over all, I'm definitely getting better every day, and that is great! I feel like the core of my body is strong and eager to heal, and that there are reasons why it's going slowly that I have yet to uncover.
Interconnected
Last night I went into the bathroom and was just looking over my neck and I noticed that the area where we'd fussed with the tape had caused it to lift entirely, it was no longer sticking to my neck at all in that area. I considered trimming it but decided without a lot of thought to just pull it. It was kind of a gut move, really. Offffff zipped the tape, it wasn't super sticky anymore and came off easily and my neck-guts didn't fall out. Score!
Here's my incision as it looks at almost 24 hours without tape on it. Click on it to see it closer up. There is a bit of the tape goo left behind but the area is quite tender and I really don't want to touch or pick at it at all. It also doesn't look this red in real life.
I went to sleep with just the thought in my mind that it might open up while I'm sleeping, and what would I do? Would I know? But that's just the post-surgical-crazy coming out and I knew that, so I went to sleep and while it was in my consciousness, it didn't bother me too much.
I had a dream that I can't remember now but I do recall that while I was dreaming it I was trying to understand it (I often sort out the meanings in my dreams as I'm having them which is handy!) This dream had something important for me to learn and I was trying to grasp it before I woke up but I don't know if I did or not.
Today I woke up feeling sad and vulnerable and emotional. I really think it has a direct relationship with the tape on my neck- I took away my 'protection' and those feelings are just there under the surface, raw and red like my neck. Today I also notice that my voice is not as strong as it was yesterday and I feel like I want to be quiet, and silent, and within.
It's interesting to me that I keep wondering if I'll reach a point soon where the 'cancer journey' has officially ended and I have nothing left to say about it, and then something completely unexpected pops up.
I also notice that I have this urge to keep the tape on because it explains so much without me having to say it- why I sound like Minnie Mouse, why my neck looks like I swallowed a dinner plate, why I'm tired, and foggy brained.
The incision looks so naked to me, it scares me. It's me, revealed, right where everyone can see it- changed forever.
Here's my incision as it looks at almost 24 hours without tape on it. Click on it to see it closer up. There is a bit of the tape goo left behind but the area is quite tender and I really don't want to touch or pick at it at all. It also doesn't look this red in real life.
I went to sleep with just the thought in my mind that it might open up while I'm sleeping, and what would I do? Would I know? But that's just the post-surgical-crazy coming out and I knew that, so I went to sleep and while it was in my consciousness, it didn't bother me too much.
I had a dream that I can't remember now but I do recall that while I was dreaming it I was trying to understand it (I often sort out the meanings in my dreams as I'm having them which is handy!) This dream had something important for me to learn and I was trying to grasp it before I woke up but I don't know if I did or not.
Today I woke up feeling sad and vulnerable and emotional. I really think it has a direct relationship with the tape on my neck- I took away my 'protection' and those feelings are just there under the surface, raw and red like my neck. Today I also notice that my voice is not as strong as it was yesterday and I feel like I want to be quiet, and silent, and within.
It's interesting to me that I keep wondering if I'll reach a point soon where the 'cancer journey' has officially ended and I have nothing left to say about it, and then something completely unexpected pops up.
I also notice that I have this urge to keep the tape on because it explains so much without me having to say it- why I sound like Minnie Mouse, why my neck looks like I swallowed a dinner plate, why I'm tired, and foggy brained.
The incision looks so naked to me, it scares me. It's me, revealed, right where everyone can see it- changed forever.
Wednesday, July 4, 2012
12 days (one graphic photo)
I'm now 12 days post surgery. I want to say it went by fast, and it did in a way, and it's also been very slow. Randy hasn't been home a lot and so when he is here, I feel like I want to just touch and be with him all the time, run away alone together for coffee and talking and touching. Alas, no time for that just yet!
Looking at my kids, this whole thing seems like it never even happened. There was never a time they said they were worried or seemed worried, hovered, or were clingy or overly attentive. I didn't sense that this was a stressful time for them and it seems odd to me. Great, I am so relieved that what I thought it would be for them was not what it turned out to be, and I feel a little cheated of some of the benefits I think I should get- you know, less arguing, more offers of chores, someone to rub my feet... ya know, the perks. ;)
Yesterday we peeled the tape back on my incision a bit. I took a photo which I want to share because I think it's good information for people going through this to know what the incision might look like post operatively. The neck itself where the incision is is quite swollen still and I have a little 'shelf' there. It looks like I swallowed a disk and it got stuck in my throat. That swelling will continue to go down as the stitches inside my neck dissolve, and especially one the tape comes off and I'm able to massage that area (ewwwwwwww that squicks me out! but I'll do it).
The area itself is still quite tender and if I turn a certain way it pulls. Driving is fine but my seatbelt rubs right on the edge of my incision and that is really irritating. When I turn my head to the left or right, I turn to a certain point and then my whole body turns too because I think I'm still just quite protective of that area and don't want to put unnecessary strain on it. I feel really confident moving my body around otherwise though.
We decided to peel the tape back just to look at the incision and I'm glad we did just because it eased some anxieties I had about it, but also bummed that my wound did not knit neatly together in a sweet, thin line. It's got some dehiscence (splitting open of a surgical wound) going on which is not worrisome but it does mean that my scar won't be nicely hidden, it will be wider at least at the points we saw.
Ready for the photo? It's a little icky so just scroll down fast if you don't want to see!
Looking at my kids, this whole thing seems like it never even happened. There was never a time they said they were worried or seemed worried, hovered, or were clingy or overly attentive. I didn't sense that this was a stressful time for them and it seems odd to me. Great, I am so relieved that what I thought it would be for them was not what it turned out to be, and I feel a little cheated of some of the benefits I think I should get- you know, less arguing, more offers of chores, someone to rub my feet... ya know, the perks. ;)
The area itself is still quite tender and if I turn a certain way it pulls. Driving is fine but my seatbelt rubs right on the edge of my incision and that is really irritating. When I turn my head to the left or right, I turn to a certain point and then my whole body turns too because I think I'm still just quite protective of that area and don't want to put unnecessary strain on it. I feel really confident moving my body around otherwise though.
We decided to peel the tape back just to look at the incision and I'm glad we did just because it eased some anxieties I had about it, but also bummed that my wound did not knit neatly together in a sweet, thin line. It's got some dehiscence (splitting open of a surgical wound) going on which is not worrisome but it does mean that my scar won't be nicely hidden, it will be wider at least at the points we saw.
Ready for the photo? It's a little icky so just scroll down fast if you don't want to see!
 |
| You can click on it to see it closer up. ;) |
If you have the courage to look closely at it you can see the surgical glue stuck to the tape and was pulled out of the wound when we pulled the tape back. We didn't pull it out, it wasn't sitting in there the way it should and my body just wasn't a fan of the glue or whatever. Looking again, you can see a small separation between the edges of the wound. It's not deeper than the layers of my skin but it will heal 'open' that way. It's too late to pull them back together and let them heal closed.
That's as far as we've pulled the tape off and now we're just leaving it alone completely. I do not have any signs of infection so other than the fact it's opened a bit, the only issue really is cosmetic as long as I don't develop an infection.
My voice is also at about 80% which is nice! I sound like myself again. Talking on the phone continues to be a real strain to my voice and talking for a long time still tires me. I don't know why, I think it has everything to do with how I am using my breath. I'm not sure the mechanics of that but I can feel myself run out of breath more often (less often than right after surgery, but still more than before surgery) and having to pause for a deep breath now and then because I get woozy. Maybe I'm just naturally woozy. ;)
As far as my thyroid replacement is concerned, I feel really normal and fine on the dosage I'm on so far. I don't now how long it would take for me to feel 'other' if my dosage is off (Levothyroxine), but right now I'm noticing that I am less tired every day, my appetite is okay, everything going in comes out fine, my heart doesn't race, my hair and skin feel nice and supple and not dry.
While I'm curious about a more natural alternative to what I'm taking, I'm also fearful of experimenting when this is working so well, at least it seems to be right now.
Monday, July 2, 2012
Pathology report
Here are the bullet points of my pathology report, just to help anyone else who is going through this and reading my blog (or for the curious!)
A,C) THYROID, RIGHT LOBE AND LEFT LOBE, RESECTION: PAPILLARY THYROID
CARCINOMA, FOLLICULAR VARIANT TYPE.
1. TUMOR SIZE: 1.1 X 0.8 X 0.7 CM.
2. TUMOR LOCATION: RIGHT LOBE.
3. TUMOR CAPSULE: TOTALLY ENCAPSULATED.
4. NO INVASION OF EXTRA THYROIDAL TISSUES IDENTIFIED.
5. SPECIMEN MARGINS: UNINVOLVED BY TUMOR.
6. TWO BENIGN CAPSULAR LYMPH NODES IDENTIFIED, NO EVIDENCE OF MALIGNANCY.
7. LYMPHOVASCULAR INVASION: NOT IDENTIFIED.
8. PERINEURAL INVASION: NOT IDENTIFIED.
9. PATHOLOGIC STAGE: pT1b, pN0, pMX.
B) SOFT TISSUES, RIGHT CENTRAL COMPARTMENT BIOPSIES: TWO SMALL LYMPH NODES IDENTIFIED, NO EVIDENCE OF METASTATIC CARCINOMA.
They surveyed the crap out of my tissues and found no cancer, anywhere else. Just the one!
A,C) THYROID, RIGHT LOBE AND LEFT LOBE, RESECTION: PAPILLARY THYROID
CARCINOMA, FOLLICULAR VARIANT TYPE.
1. TUMOR SIZE: 1.1 X 0.8 X 0.7 CM.
2. TUMOR LOCATION: RIGHT LOBE.
3. TUMOR CAPSULE: TOTALLY ENCAPSULATED.
4. NO INVASION OF EXTRA THYROIDAL TISSUES IDENTIFIED.
5. SPECIMEN MARGINS: UNINVOLVED BY TUMOR.
6. TWO BENIGN CAPSULAR LYMPH NODES IDENTIFIED, NO EVIDENCE OF MALIGNANCY.
7. LYMPHOVASCULAR INVASION: NOT IDENTIFIED.
8. PERINEURAL INVASION: NOT IDENTIFIED.
9. PATHOLOGIC STAGE: pT1b, pN0, pMX.
B) SOFT TISSUES, RIGHT CENTRAL COMPARTMENT BIOPSIES: TWO SMALL LYMPH NODES IDENTIFIED, NO EVIDENCE OF METASTATIC CARCINOMA.
They surveyed the crap out of my tissues and found no cancer, anywhere else. Just the one!
Sunday, July 1, 2012
Voice
Today I woke up with really mild pain- which is so great, what a success! Pain is taxing and tiring and I think as my pain winds down my energy level will hopefully level up a bit. I think I'm healing up really well, I didn't expect to be pain free right away.
I am accepting that my voice doesn't work just yet, and I'm finding a new way with it. I find that I choose to be silent a lot more often- I had small thoughts that I would struggle with not being able to 'speak', when I find that silence is just as informative oftentimes as speaking is. I had been really working on choosing when to speak long before I ever knew I had cancer- I quiet my thoughts and still my hand FAR more often than I speak out! It has been good to learn to let things develop in their own timeline without my encouragement or support or whatever I had to offer in the moment - what would happen if I said nothing? I ask myself that question a lot.
It feels like training for what I'm experiencing now, which is to physically not be able to verbally express my thoughts. I speak too much, it's a hard 'habit' to break, so I end up silenced by that because the lump swells in my throat and it's an uncomfortable reminder to keep silent.
The silence is quite liberating. I have had to get my kids to understand that I can only tell them something one time, and that I need them to listen right away. It gives me (more) time to choose my words and use them wisely, to ask other people to speak for me (which is something that is completely new to me, and probably most people I'd guess?).
Arguing is difficult and so I don't do it. I wait.
Singing is impossible. I try anyway. How can I not sing? Unfortunately while I had high hopes this surgery would correct whatever anatomical flaw prevents me from sounding like the Botticelli angel that I hear in my mind, alas.... the world will just have to suffer without my talents a while longer.
I feel like I'm on the leading edge of something important, that this is a necessary step in this journey. I told you this was not about my body, this was about my life - this cancer was teaching me something about my life, my Spirit. This is my Medicine Walk.
I'm doing my best to keep my heart curious and open, knowing that when the hard times come, that they are transient and to my ultimate benefit.
I am accepting that my voice doesn't work just yet, and I'm finding a new way with it. I find that I choose to be silent a lot more often- I had small thoughts that I would struggle with not being able to 'speak', when I find that silence is just as informative oftentimes as speaking is. I had been really working on choosing when to speak long before I ever knew I had cancer- I quiet my thoughts and still my hand FAR more often than I speak out! It has been good to learn to let things develop in their own timeline without my encouragement or support or whatever I had to offer in the moment - what would happen if I said nothing? I ask myself that question a lot.
It feels like training for what I'm experiencing now, which is to physically not be able to verbally express my thoughts. I speak too much, it's a hard 'habit' to break, so I end up silenced by that because the lump swells in my throat and it's an uncomfortable reminder to keep silent.
The silence is quite liberating. I have had to get my kids to understand that I can only tell them something one time, and that I need them to listen right away. It gives me (more) time to choose my words and use them wisely, to ask other people to speak for me (which is something that is completely new to me, and probably most people I'd guess?).
Arguing is difficult and so I don't do it. I wait.
Singing is impossible. I try anyway. How can I not sing? Unfortunately while I had high hopes this surgery would correct whatever anatomical flaw prevents me from sounding like the Botticelli angel that I hear in my mind, alas.... the world will just have to suffer without my talents a while longer.
I feel like I'm on the leading edge of something important, that this is a necessary step in this journey. I told you this was not about my body, this was about my life - this cancer was teaching me something about my life, my Spirit. This is my Medicine Walk.
I'm doing my best to keep my heart curious and open, knowing that when the hard times come, that they are transient and to my ultimate benefit.
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