I feel this dance of one-step-forward, one-step-back happening since I got home from the hospital. I'll feel pretty okay for a couple of days, and then the third day is a whopper where I feel wiped out, emotional, sad... basically scorched out. In my mind I see a tree whose center has been burned by a great fire. It's still growing, but the center has just been made into charcoal. That is me, on days like this, or after births.
Today is a 'scorched tree' day.
It's wearing on me how hard it is to talk and interact with my family. My kids really have been supportive and great and even though you can't get through a day without squabbling children at some point, they've taken care of each other well and I am really grateful. I have been able to talk a bit with Randy (who comes home today, yay!) and that's been good. It feels good for him to see that I am improving daily, and it will be great to have his help when he gets back.
It's hard for me to talk for any length, I get this feeling of a giant lump pressing on my esophagus which is uncomfortable and distracting but not painful. At night I wake up and I'm sore and nauseas, but after I take my medication, I have a snack and I feel better. I have good energy on non scorched-tree days.
I just want to get into my comfy clothes and climb into my bed and sleep for a few hours. I don't know that it's going to happen today.
If the dance steps don't change, tomorrow I will feel a lot better. Keeping my eye on what's coming and not rushing what's happening now.
Friday, June 29, 2012
Dear Cancer
Dear Cancer,
We had a rocky beginning you and I. Looking back I think you had a plan for me, and until I was able to get on board and see it, I resisted and was afraid of the new life you required me to step into.
Our relationship broke me down from the bottom up- looking at myself in a very fundamental way, I questioned my identity as a human being in community with others, my very value in the world. I probed at wounds left unattended for a long time and found that they still weep and wait for Medicine. My inner-child even got a few visits as old patterns re-emerged and old pains resurfaced.
One thing that I have come to believe through this process is that we all have things to learn in this life- our life time, even if measured in moments, is a bounty of experiences that enrich us deeply before we let go of our heartbeats and worldly selves. We each learn at our own pace, and some people pick things up quickly (maybe many iterations of themSelves already been here and the lessons familiar?). Some resist and struggle and learn in large bursts of intense experiences, and rail and question in between. Some people learn slowly- every lesson a chore and seemingly insurmountable and unfair to have to experience. All are right, all are the way they should be- none better than others.
I think for Healers, for people who have picked up the quicker lessons quickly, it takes something big to break us down. Healing and learning happen when we are broken down to our smallest (yet largest) selves, we suddenly begin to question things in a deeper way in order to survive the terrible pain and fear we're experiencing. We open ourselves up to new experiences, new ways of thinking.
One might say it is violent to till the earth- disrupting the smooth ground and all that lives beneath it for our own means. Tearing the bodies of roots and worms so that we might plant new things.
The tearing must happen, the ripping up of established thoughts, beliefs, and processes must happen, if we are going to plant the new seeds of who we are becoming.
This is what I believe our life experience is, at least a facet of it- we are torn open over and over so that our established ways of being might be broken and challenged to grow new directions in order to continue living, that we might recognize the things we no longer want to nurture and pluck them, and make room to plant new ways for ourselves.
Cancer, you have been a great gardener. You came into my life at just the right time (of course), and eased me into the idea that we might have a dance to do. I did not have to suddenly find out I had cancer, I had time to dip into that idea before I knew for sure we'd be spending time together. I appreciate that.
I had to honestly imagine the darkness of telling my children that I might have some awful version of you, one that would end my physical life with them - and it was a dark time for me. I went deep into the Underworld, feeling terribly sad and lost but still anchored firmly in the realities of what was ahead, no matter what.
While I am glad that we are no longer together, I am not angry about you coming into my life- I never was. I felt heart broken, a deep heart break, sad and afraid of how I would let you fit into my life (worrying all the time that I would have to stop everything and make my whole life all about you, which thankfully, you didn't force me to do).
Rather, I feel tremendous gratitude. I knew from the beginning we were going to do great things together, that I would be deeper, enriched, and expanded because of you- and that has all been proven true.
My heart is softer. My ability to love myself with less judging is bigger. I feel less connected to "What I should do" and more connected to doing what feels right in the moment. I am open to seeing grace in situations where I couldn't afford to give it before. The constant chatter is quieter in my head, and I feel a tremendous sense of curiosity about all things that is so much bigger and deeper than it was before you came into my life.
I wonder, all the time. I just wonder about things. I am in my body more than I have ever been in my life. I am seeing through my eyes, and touching with my skin, and feeling all of those things instantly rather than having to dive down to find those sensations. I saw a tall, purple foxglove in a neighbor's yard the other day and it was so real, so here, and for once, so was I. I was the foxglove. For once, it feels safe to be in my body.
I don't want to say too much, wrapping words around what I'm experiencing puts some kind of limit around it and the experience is private and mine - but I wanted you to know that while it cost me a little, I feel that what I have given away to be here today, in this place of wonder and curiosity, and deep, unwavering LOVE, is a small price to pay.
Thank you for leaving quietly and leaving behind such an incredible impact in my life.
We had a rocky beginning you and I. Looking back I think you had a plan for me, and until I was able to get on board and see it, I resisted and was afraid of the new life you required me to step into.
Our relationship broke me down from the bottom up- looking at myself in a very fundamental way, I questioned my identity as a human being in community with others, my very value in the world. I probed at wounds left unattended for a long time and found that they still weep and wait for Medicine. My inner-child even got a few visits as old patterns re-emerged and old pains resurfaced.
One thing that I have come to believe through this process is that we all have things to learn in this life- our life time, even if measured in moments, is a bounty of experiences that enrich us deeply before we let go of our heartbeats and worldly selves. We each learn at our own pace, and some people pick things up quickly (maybe many iterations of themSelves already been here and the lessons familiar?). Some resist and struggle and learn in large bursts of intense experiences, and rail and question in between. Some people learn slowly- every lesson a chore and seemingly insurmountable and unfair to have to experience. All are right, all are the way they should be- none better than others.
I think for Healers, for people who have picked up the quicker lessons quickly, it takes something big to break us down. Healing and learning happen when we are broken down to our smallest (yet largest) selves, we suddenly begin to question things in a deeper way in order to survive the terrible pain and fear we're experiencing. We open ourselves up to new experiences, new ways of thinking.
One might say it is violent to till the earth- disrupting the smooth ground and all that lives beneath it for our own means. Tearing the bodies of roots and worms so that we might plant new things.
The tearing must happen, the ripping up of established thoughts, beliefs, and processes must happen, if we are going to plant the new seeds of who we are becoming.
This is what I believe our life experience is, at least a facet of it- we are torn open over and over so that our established ways of being might be broken and challenged to grow new directions in order to continue living, that we might recognize the things we no longer want to nurture and pluck them, and make room to plant new ways for ourselves.
Cancer, you have been a great gardener. You came into my life at just the right time (of course), and eased me into the idea that we might have a dance to do. I did not have to suddenly find out I had cancer, I had time to dip into that idea before I knew for sure we'd be spending time together. I appreciate that.
I had to honestly imagine the darkness of telling my children that I might have some awful version of you, one that would end my physical life with them - and it was a dark time for me. I went deep into the Underworld, feeling terribly sad and lost but still anchored firmly in the realities of what was ahead, no matter what.
While I am glad that we are no longer together, I am not angry about you coming into my life- I never was. I felt heart broken, a deep heart break, sad and afraid of how I would let you fit into my life (worrying all the time that I would have to stop everything and make my whole life all about you, which thankfully, you didn't force me to do).
Rather, I feel tremendous gratitude. I knew from the beginning we were going to do great things together, that I would be deeper, enriched, and expanded because of you- and that has all been proven true.
My heart is softer. My ability to love myself with less judging is bigger. I feel less connected to "What I should do" and more connected to doing what feels right in the moment. I am open to seeing grace in situations where I couldn't afford to give it before. The constant chatter is quieter in my head, and I feel a tremendous sense of curiosity about all things that is so much bigger and deeper than it was before you came into my life.
I wonder, all the time. I just wonder about things. I am in my body more than I have ever been in my life. I am seeing through my eyes, and touching with my skin, and feeling all of those things instantly rather than having to dive down to find those sensations. I saw a tall, purple foxglove in a neighbor's yard the other day and it was so real, so here, and for once, so was I. I was the foxglove. For once, it feels safe to be in my body.
I don't want to say too much, wrapping words around what I'm experiencing puts some kind of limit around it and the experience is private and mine - but I wanted you to know that while it cost me a little, I feel that what I have given away to be here today, in this place of wonder and curiosity, and deep, unwavering LOVE, is a small price to pay.
Thank you for leaving quietly and leaving behind such an incredible impact in my life.
Wednesday, June 27, 2012
Holy crap what a day!
Well, this will take a bit of back tracking but it's a captivating story with a good ending so hang in there.
When I had my surgery on Friday, my surgeon stopped in and said that I have the follicular variant of papillary carcinoma. This basically doesn't mean much as far as a change in prognosis or treatment, so whoopdee doo. She said that when she went into my neck that the lymph nodes looked really good so rather than taking all on the right, and some on the left, she just took the right ones (nearest the tumor), and the whole thyroid.
In the midst of preparing for surgery I really considered about radiation, and after a chat with my endo and my surgeon I decided that if I don't have cancer in my lymph nodes, I wouldn't have radiation. She said that the lymph nodes she pulled out looked healthy but that we'd need the pathology report to know for sure. She said it would be in on Wednesday and I'd be able to just call to get those results. As she had come in on her day off, her partners would be around to care for me.
Fast forward to today- it was time to make the call to get my pathology results. I started to feel a little nervous- because I really really don't want radiation and I knew that would just be one more hard step in this journey that I didn't want to have to take. It started to hit me that I might actually have to say yes to it and I was just getting a little bit nervous about getting my results, and wishing Randy was home.
Now, my surgeon told me to call and get my results on Wednesday, so I called who I always call- my primary care doctor. I belong to a big HMO that is all interconnected, one huge network, so we're talking about every provider I see being able to see and interact with my entire medical record. Consulting nurses can see emails I've sent my providers, times I've opened my emails from them and viewed lab results online, the whole shebang. Fully automated. I'm told to call for results, I call my primary care doc, just like I always have for everything else.
I call and say that I am calling to find out the results of my pathology report, and the woman who answers basically says she's not able to tell me over the phone as she's not an RN or MD. She'll speak with the RN about it and call me back. Let me just say here that the ONLY time I have ever, ever, ever been put off from getting results right away, over the phone, or released to my online record, was when they were outside of normal limits, or flagged for some reason. So when she calls back and says that the RN doesn't feel comfortable giving the results over the phone, I freak the fuck right out. I explain to her that all I need to know is if they found cancer in my lymph nodes- I already know I had thyroid cancer, because as you can hear in my voice ma'am, I just had surgery FOR the cancer. She just said she was very sorry (in a scarily sympathetic voice) and that we'd set up a phone visit with my doctor at 3:30, which was 2.5 hours away. Okay... fine, I can stay busy till then.
But then my mind starts wandering of course, why wouldn't they just tell me over the phone if there's cancer? The only reason would be if there's another kind of cancer - one of the bad ones. Oh my god, it's one of the bad ones, and I only have months left to live! Oh my goodness I'm going to have to get chemo, how will we tell the kids? Wait, calm down.... breathe... there can be other possibilities that you aren't aware of, don't get crazy now... but whythehell did she sound so sympathetic? Was that like, "I'm so sorry you're going to die soon" sympathy or "I can't help you and I know you're upset" sympathy?
So, continue to spin until 3:15 when I get on Skype with Randy and we wait together for that phone to ring. 3:30 ticks by. 3:45. 4pm. 4:30. Now it's 5pm and I have people on my Facebook page threatening fire and pitchfork action if this doctor doesn't freaking call me, and urging me to just call them- so I finally did at about 5:15.
The woman who answers is a nurse who knows who I am personally, we've spoken many times, and she's always been super supportive, creative, calming and awesome. Today, not so much.
Me: "I had a phone visit with Dr. B at 3:30, it's 5pm and I just haven't heard anything."
Her: "Oh, well... she does all her phone visits at the end of the day."
Me: {Mouth agape for a few seconds}... "Um, someone made an appointment for me at 3:30. I am not waiting for test results until the end of the day when I've already been sitting here for almost two hours expecting the phone to ring with my results. I've already been waiting since 1:00 this afternoon and put off, I am NOT going to wait any longer.
Her: "Well.. you've been her patient for a while, right?..."
Me: "Yes." (I'm getting really, really angry now.)
Her: "Well, you know how her appointments run........" (as in, they run long, and she's always, always running way behind because she takes her time with each patient).
Me: "I have been her patient a long time and I understand she runs late and that's fine, that's why I waited until 5pm to call. But now your'e telling me I need to hang up the phone and wait some more because she does her phone visits at the end of the day, and if that's true, why didn't someone tell me that? Why have I been waiting all day for these results? (I start getting hysterical) I NEED SOMEONE TO TELL ME MY RESULTS RIGHT NOW!! I NEED YOU TO FIND SOMEONE IN THAT CLINIC RIGHT NOW WHO CAN TELL ME THAT IF I HAVE ANOTHER KIND OF CANCER BECAUSE I'M SITTING HERE ALL DAY THINKING I'M GOING TO DIE. PLEASE.please.please.please.
(Meanwhile, I'm still sitting on Skype with Randy and he's watching this whole conversation go down. He mutes me and calls his mother (who is a manager at this HMO) and all I see is him raging an cussing and yelling into the phone, because he's watching me freak out and get no where.)
Her: {She's sounding now very uncomfortable and torn, she hears how desperate and upset I am and clearly wants to help but does NOT know what to do.} "Did you try calling your endocrinologist first? Aren't they the ones who ordered the test?"
Me: "Contrary to what you might think, no one gives you a GUIDE to cancer. No one tells you 'now all your questions should be focused to this person', and when I am told by my surgeon, who ordered the test, by the way, to 'call for results', I am going to do naturally what anyone else would do- I'm goin to call my freaking doctor! And if she's not the person I should be talking to about this the person who made my damn appointment should have TOLD ME THAT and not wasted my time! Now you FIND someone who can tell me my test results, I am not geting off this phone until I know what is going on!"
{This whole thing is scaring me to DEATH- the fact I'm getting this sort of weird run around has me even more fully worried that I have the really bad scary thyroid cancer that kills you in a year, and that's after you've bought time with chemo. Why else would they not say, "Lymph nodes looked fine!" I'm getting increasingly upset and angry and emotional and now I've decided that if she doesn't find someone immediately who is qualified to give me my results I will be driving down to the clinic and raising some H-E-double-hockey-sticks!!}
Her: "Hang on, hang on. She's in a patient room right now, I'll grab her and see if we can get her on the phone right away."
FINALLY.
So the rest of the conversation was spent with my doctor who said that I'm a T1N0Mx. Uncoded, T=thyroid and the # = number of cancer, so I have T=thyroid, 1, N=nodes, 0, and M=distant metastases, x (because we didn't scan for that).
In shorthand, one growth in my thyroid, NONE in my lymph nodes!!!
I explained what happened to my doctor and she apologized profusely and said yes, anytime I have specific cancer questions to talk to my endocrinologist. I can always call her and she'll do her best to give me the info I need, but I'd be going a more direct route to call him directly. Thank you, doc!
At the end of the day it was a series of innocent follies that led to me freaking the heck out and Randy too - which also did make getting the news that much sweeter. The first person I called was my mom, who has felt very disconnected from this whole thing (which I am fine with, I'm not close to her) but she's been so worried considering her husband died of cancer a couple of years ago, I wanted to ease her mind right away. We both burst into tears when we talked and I was so grateful that I am eased of this.
I don't have cancer anymore. Done! Done.
I'm going to post this because the next post will be more about what I've learned, am learning- so much has changed in me because of this experience and I hesitate to write it all out just yet. I want to sit in it for a while first. :)
In the meantime- thank you for visiting, and farewell, cancer!
When I had my surgery on Friday, my surgeon stopped in and said that I have the follicular variant of papillary carcinoma. This basically doesn't mean much as far as a change in prognosis or treatment, so whoopdee doo. She said that when she went into my neck that the lymph nodes looked really good so rather than taking all on the right, and some on the left, she just took the right ones (nearest the tumor), and the whole thyroid.
In the midst of preparing for surgery I really considered about radiation, and after a chat with my endo and my surgeon I decided that if I don't have cancer in my lymph nodes, I wouldn't have radiation. She said that the lymph nodes she pulled out looked healthy but that we'd need the pathology report to know for sure. She said it would be in on Wednesday and I'd be able to just call to get those results. As she had come in on her day off, her partners would be around to care for me.
Fast forward to today- it was time to make the call to get my pathology results. I started to feel a little nervous- because I really really don't want radiation and I knew that would just be one more hard step in this journey that I didn't want to have to take. It started to hit me that I might actually have to say yes to it and I was just getting a little bit nervous about getting my results, and wishing Randy was home.
Now, my surgeon told me to call and get my results on Wednesday, so I called who I always call- my primary care doctor. I belong to a big HMO that is all interconnected, one huge network, so we're talking about every provider I see being able to see and interact with my entire medical record. Consulting nurses can see emails I've sent my providers, times I've opened my emails from them and viewed lab results online, the whole shebang. Fully automated. I'm told to call for results, I call my primary care doc, just like I always have for everything else.
I call and say that I am calling to find out the results of my pathology report, and the woman who answers basically says she's not able to tell me over the phone as she's not an RN or MD. She'll speak with the RN about it and call me back. Let me just say here that the ONLY time I have ever, ever, ever been put off from getting results right away, over the phone, or released to my online record, was when they were outside of normal limits, or flagged for some reason. So when she calls back and says that the RN doesn't feel comfortable giving the results over the phone, I freak the fuck right out. I explain to her that all I need to know is if they found cancer in my lymph nodes- I already know I had thyroid cancer, because as you can hear in my voice ma'am, I just had surgery FOR the cancer. She just said she was very sorry (in a scarily sympathetic voice) and that we'd set up a phone visit with my doctor at 3:30, which was 2.5 hours away. Okay... fine, I can stay busy till then.
But then my mind starts wandering of course, why wouldn't they just tell me over the phone if there's cancer? The only reason would be if there's another kind of cancer - one of the bad ones. Oh my god, it's one of the bad ones, and I only have months left to live! Oh my goodness I'm going to have to get chemo, how will we tell the kids? Wait, calm down.... breathe... there can be other possibilities that you aren't aware of, don't get crazy now... but whythehell did she sound so sympathetic? Was that like, "I'm so sorry you're going to die soon" sympathy or "I can't help you and I know you're upset" sympathy?
So, continue to spin until 3:15 when I get on Skype with Randy and we wait together for that phone to ring. 3:30 ticks by. 3:45. 4pm. 4:30. Now it's 5pm and I have people on my Facebook page threatening fire and pitchfork action if this doctor doesn't freaking call me, and urging me to just call them- so I finally did at about 5:15.
The woman who answers is a nurse who knows who I am personally, we've spoken many times, and she's always been super supportive, creative, calming and awesome. Today, not so much.
Me: "I had a phone visit with Dr. B at 3:30, it's 5pm and I just haven't heard anything."
Her: "Oh, well... she does all her phone visits at the end of the day."
Me: {Mouth agape for a few seconds}... "Um, someone made an appointment for me at 3:30. I am not waiting for test results until the end of the day when I've already been sitting here for almost two hours expecting the phone to ring with my results. I've already been waiting since 1:00 this afternoon and put off, I am NOT going to wait any longer.
Her: "Well.. you've been her patient for a while, right?..."
Me: "Yes." (I'm getting really, really angry now.)
Her: "Well, you know how her appointments run........" (as in, they run long, and she's always, always running way behind because she takes her time with each patient).
Me: "I have been her patient a long time and I understand she runs late and that's fine, that's why I waited until 5pm to call. But now your'e telling me I need to hang up the phone and wait some more because she does her phone visits at the end of the day, and if that's true, why didn't someone tell me that? Why have I been waiting all day for these results? (I start getting hysterical) I NEED SOMEONE TO TELL ME MY RESULTS RIGHT NOW!! I NEED YOU TO FIND SOMEONE IN THAT CLINIC RIGHT NOW WHO CAN TELL ME THAT IF I HAVE ANOTHER KIND OF CANCER BECAUSE I'M SITTING HERE ALL DAY THINKING I'M GOING TO DIE. PLEASE.please.please.please.
(Meanwhile, I'm still sitting on Skype with Randy and he's watching this whole conversation go down. He mutes me and calls his mother (who is a manager at this HMO) and all I see is him raging an cussing and yelling into the phone, because he's watching me freak out and get no where.)
Her: {She's sounding now very uncomfortable and torn, she hears how desperate and upset I am and clearly wants to help but does NOT know what to do.} "Did you try calling your endocrinologist first? Aren't they the ones who ordered the test?"
Me: "Contrary to what you might think, no one gives you a GUIDE to cancer. No one tells you 'now all your questions should be focused to this person', and when I am told by my surgeon, who ordered the test, by the way, to 'call for results', I am going to do naturally what anyone else would do- I'm goin to call my freaking doctor! And if she's not the person I should be talking to about this the person who made my damn appointment should have TOLD ME THAT and not wasted my time! Now you FIND someone who can tell me my test results, I am not geting off this phone until I know what is going on!"
{This whole thing is scaring me to DEATH- the fact I'm getting this sort of weird run around has me even more fully worried that I have the really bad scary thyroid cancer that kills you in a year, and that's after you've bought time with chemo. Why else would they not say, "Lymph nodes looked fine!" I'm getting increasingly upset and angry and emotional and now I've decided that if she doesn't find someone immediately who is qualified to give me my results I will be driving down to the clinic and raising some H-E-double-hockey-sticks!!}
Her: "Hang on, hang on. She's in a patient room right now, I'll grab her and see if we can get her on the phone right away."
FINALLY.
So the rest of the conversation was spent with my doctor who said that I'm a T1N0Mx. Uncoded, T=thyroid and the # = number of cancer, so I have T=thyroid, 1, N=nodes, 0, and M=distant metastases, x (because we didn't scan for that).
In shorthand, one growth in my thyroid, NONE in my lymph nodes!!!
I explained what happened to my doctor and she apologized profusely and said yes, anytime I have specific cancer questions to talk to my endocrinologist. I can always call her and she'll do her best to give me the info I need, but I'd be going a more direct route to call him directly. Thank you, doc!
At the end of the day it was a series of innocent follies that led to me freaking the heck out and Randy too - which also did make getting the news that much sweeter. The first person I called was my mom, who has felt very disconnected from this whole thing (which I am fine with, I'm not close to her) but she's been so worried considering her husband died of cancer a couple of years ago, I wanted to ease her mind right away. We both burst into tears when we talked and I was so grateful that I am eased of this.
I don't have cancer anymore. Done! Done.
I'm going to post this because the next post will be more about what I've learned, am learning- so much has changed in me because of this experience and I hesitate to write it all out just yet. I want to sit in it for a while first. :)
In the meantime- thank you for visiting, and farewell, cancer!
Back into Shadow
Hopefully, just for a moment, I step back into Shadow- where the fear lives, the anxiety and worries. Just for a moment. Maybe a couple of hours. I hope that's all.
I called to get my pathology report because no one's called yet. The fact no one's called and they're not released in my online record had me just plucking at the idea that maybe the cancer is actually in my lymph nodes and they can't tell me until I call. I figured I'd call, explain that they can't NOT tell me I have cancer in my lymph nodes when I already know I have cancer right?
Wrong. I called and the woman who answered the phone said that she'd have to talk with the RN and call me back. I said, "I am just calling to find out the status of my lymph nodes, it's not like you're going to tell me I had cancer- I already know that." She promised to call me back. Immediately I start freaking out and that comes as a shock to me because I've been prepared to get the news that I had cancer in my lymph nodes ever since this all started. I know it doesn't change my prognosis. I know that it means I will have to have radiation which I don't want (at all) but at the end of the day is way better than surgery, right? Or chemo?
The most awful thing about a medical situation is the not knowing. Hands down. I can take the news (at least, I can take the news I've been given in my life thus far), I can't take waiting for the news.
A few minutes later she calls back and now she has a sympathetic sound to her voice which is NOT helpful, it's scary, and she says, "The RN doesn't feel comfortable talking with you about it over the phone and would prefer you talk with your doctor. We have a phone visit at 3:30 for you, will that work?"
My guts turn to ice and I can't talk, and not because I have no voice but because I've stopped breathing and I am hoping she'll say, "Don't worry, you probably already know what this will be" but she doesn't, she just waits for me to answer and I squeak out a whisper, ".... Okay." I can't say anything else. My first thought is, I have two types of cancer and one is treatable and okay, and the other is not and I'm going to get the news today that I am going to change my whole life course in order to survive. In a flash in my mind, less than a second, I imagine myself again, telling my kids that I am going to die and that I am going to have boatloads of chemo and lose my hair and drop my dreams because suddenly nothing about being a midwife seems nearly as important as just being alive. The flash is over in a fraction of a second and I hang up the phone.
Fortunately a friend came over and I cried on her and so I feel a little calmer, but I'm still scared. I'm shocked by this, I expected the rest of this course to be mapped out.
Maybe it still is. Maybe the RN is just skittish, or too busy. But then why did the woman who called me sound so sympathetic?
If I find out that the cancer I already knew I had moved into my lymph nodes (the news I was expecting to get) and that's it, I am going to go ballistic on someone in that office. That's all I'm saying.
I called to get my pathology report because no one's called yet. The fact no one's called and they're not released in my online record had me just plucking at the idea that maybe the cancer is actually in my lymph nodes and they can't tell me until I call. I figured I'd call, explain that they can't NOT tell me I have cancer in my lymph nodes when I already know I have cancer right?
Wrong. I called and the woman who answered the phone said that she'd have to talk with the RN and call me back. I said, "I am just calling to find out the status of my lymph nodes, it's not like you're going to tell me I had cancer- I already know that." She promised to call me back. Immediately I start freaking out and that comes as a shock to me because I've been prepared to get the news that I had cancer in my lymph nodes ever since this all started. I know it doesn't change my prognosis. I know that it means I will have to have radiation which I don't want (at all) but at the end of the day is way better than surgery, right? Or chemo?
The most awful thing about a medical situation is the not knowing. Hands down. I can take the news (at least, I can take the news I've been given in my life thus far), I can't take waiting for the news.
A few minutes later she calls back and now she has a sympathetic sound to her voice which is NOT helpful, it's scary, and she says, "The RN doesn't feel comfortable talking with you about it over the phone and would prefer you talk with your doctor. We have a phone visit at 3:30 for you, will that work?"
My guts turn to ice and I can't talk, and not because I have no voice but because I've stopped breathing and I am hoping she'll say, "Don't worry, you probably already know what this will be" but she doesn't, she just waits for me to answer and I squeak out a whisper, ".... Okay." I can't say anything else. My first thought is, I have two types of cancer and one is treatable and okay, and the other is not and I'm going to get the news today that I am going to change my whole life course in order to survive. In a flash in my mind, less than a second, I imagine myself again, telling my kids that I am going to die and that I am going to have boatloads of chemo and lose my hair and drop my dreams because suddenly nothing about being a midwife seems nearly as important as just being alive. The flash is over in a fraction of a second and I hang up the phone.
Fortunately a friend came over and I cried on her and so I feel a little calmer, but I'm still scared. I'm shocked by this, I expected the rest of this course to be mapped out.
Maybe it still is. Maybe the RN is just skittish, or too busy. But then why did the woman who called me sound so sympathetic?
If I find out that the cancer I already knew I had moved into my lymph nodes (the news I was expecting to get) and that's it, I am going to go ballistic on someone in that office. That's all I'm saying.
A really, really good day.
Today was really great. I did not expect to have the kind of day I had today, so every new thing just made it all even better.
Checking in on how I'm doing physically- I woke up feeling really unsure about how I was going to make it through today. There are some very distinct challenges involved with this surgery (I'm assuming not all surgeries under general anesthesia leave you with no voice for several days to weeks afterward.) Four days after my surgery I don't have a regular speaking voice and often can't talk above a whisper. If I don't talk at all for a while I do have a little more tone to my voice but being the solo parent in a house of three kids and navigating visits from friends- kinda hard to be silent for any length of time!
I am steadily taking 400mg of ibuprofen every four hours on the dot. I wake up in the night to take it because when it wears off, it wakes me up. It's not intense pain, it's a dull pain that allows me to also feel the swelling in my neck (which presses on my esophagus sometimes and feels really uncomfortable). The general tightness in my shoulders and neck is almost gone but I've got this stinging/burning sensation and it's sometimes itchy under my bandage. Add to that, my skin is getting pretty irritated from the tape (which is solidly adhered to me, not lifting at all yet!) and I'm working to not touch my neck much - but it's a challenge. I don't want to get an infection, I think my worst fear right now is having to be opened back up again. That was NO fun.
Again I say to you whackadoos who said this surgery was easy- did you not have to wake up from general anesthesia? That was so awful, I hate not having control over my body and being reliant on someone else to meet my physical needs in this way, hovering between awake and asleep and not being able to just decide to be awake, or asleep. It reminds me of when I was younger and I drank too much and wanted to sober up because it was starting to freak me out, and I couldn't just will myself sober. I can't will myself to be fully awake from anesthesia all of a sudden and it makes me feel a sense of panic.
So that's the hardest part of the whole thing honestly- that and the dehydration. I guess I can write more about that now that my stamina is a little better. After my surgery they left a heplock in but took the IV out, so no more fluids going in. I was taking ice chips right away but I was also very nauseated. I did not have a catheter so output was measured by a 'hat' in the toilet. The first shift of nursing did not track what I was drinking at all, and did not track output really because I only got up once and there was no hat in the toilet (and I didn't know there should be one or I would have asked for one). Consequently I got extremely dehydrated but didn't realize that was what was happening. All I knew was that I was feeling sicker and sicker and I just couldn't drink enough water to make my mouth stop feeling so (increasingly) dry, and I kept sleeping instead of being awake and feeling bad. I was sipping as often as I could but it kept making me want to throw up. I only barfed once but the nausea was ever present and really just got worse and worse, and I was terribly weak.
Finally at some point during the night my heart started feeling funny. I couldn't figure out what was going on but I thought, "I'm in the dang hospital, I might as well have someone take a listen." I called the nurse to come in and listen and my heart rate was like 120-ish. My oxygen levels were hovering around 91 so we put the canula back in my nose and it hit me - I was dehydrated! I actually thought about all those survival shows and how they talk about the signs of dehydration and then I finally consciously noticed that I hadn't peed, that my mouth was extremely dry, lips were feeling cracked, and now my heart was racing out of my chest. I asked for an IV, I took some calcium and shortly after I felt a world better than I had before.
Note to self (and to you): Keep the IV going until you're solidly eating and drinking!
As to today, sweet Jolene came and liberated Niall and Eidie from the house for a few hours, and Erin and I went out to lunch at one of my favorite places. It was actually quite exhausting- mainly because I couldn't shut up. We sat down and got our water and I started feeling woozy and queasy and wondering if it would be rude to ask to go home, but we stuck it out and ate clams and alsatian tart flambe and scooted home. It was perfect and wonderful to catch up and it also showed me that I'm not quite ready for lengthy outings. Then my pal Heather delivered an incredible dinner and even stayed for about an hour and we got some really rare, precious time to just catch up with each other and talk about our respective futures. I rented a movie for the kids and then Jolene came over to taste some of that amazing dinner and brought a hard lemonade. We chatted until way past the kids bedtime and she scooted home.
I so rarely get this easy kind of time with my friends where there isn't some kind of lengthy planning, timelines, limits and juggling. It was delicious having people come to me and while I couldn't entertain for long, the time was so warmly spent - my heart is really full tonight even if I go to bed with no voice.
Tomorrow, more friends taking Eidie for some adventures, another friend bringing food for dinner and movie night and wine with a friend. I feel like I shouldn't be having this much of a good time when I'm so reliant on people just to help me get through each day- but I am having fun, and I hope they are having fun, too.
My aunt called today to tell me that she thinks she can't go with me on this trip we've been planning for some personal reasons, and I talked with her about seeing past them. I told her that if cancer has taught me anything, it's taught me to learn to receive without guilt, and without feeling that I don't deserve it. I spend a lot of time convinced that people don't know how selfish I really am, that if they knew, they wouldn't love me as much. The truth is that I am as real as I can be in any given moment and that I still draw the most incredible human beings around me.
I told my aunt that she doesn't have to get cancer to learn to receive the gifts that are coming her way just because she has given truly of herself to others. I tell my friends all the time- our friends are reflections of the energy we put out into the world, and that they are exquisite human beings to have pulled us all toward them. I only figured out a few days ago that the same is true of me.
Checking in on how I'm doing physically- I woke up feeling really unsure about how I was going to make it through today. There are some very distinct challenges involved with this surgery (I'm assuming not all surgeries under general anesthesia leave you with no voice for several days to weeks afterward.) Four days after my surgery I don't have a regular speaking voice and often can't talk above a whisper. If I don't talk at all for a while I do have a little more tone to my voice but being the solo parent in a house of three kids and navigating visits from friends- kinda hard to be silent for any length of time!
I am steadily taking 400mg of ibuprofen every four hours on the dot. I wake up in the night to take it because when it wears off, it wakes me up. It's not intense pain, it's a dull pain that allows me to also feel the swelling in my neck (which presses on my esophagus sometimes and feels really uncomfortable). The general tightness in my shoulders and neck is almost gone but I've got this stinging/burning sensation and it's sometimes itchy under my bandage. Add to that, my skin is getting pretty irritated from the tape (which is solidly adhered to me, not lifting at all yet!) and I'm working to not touch my neck much - but it's a challenge. I don't want to get an infection, I think my worst fear right now is having to be opened back up again. That was NO fun.
Again I say to you whackadoos who said this surgery was easy- did you not have to wake up from general anesthesia? That was so awful, I hate not having control over my body and being reliant on someone else to meet my physical needs in this way, hovering between awake and asleep and not being able to just decide to be awake, or asleep. It reminds me of when I was younger and I drank too much and wanted to sober up because it was starting to freak me out, and I couldn't just will myself sober. I can't will myself to be fully awake from anesthesia all of a sudden and it makes me feel a sense of panic.
So that's the hardest part of the whole thing honestly- that and the dehydration. I guess I can write more about that now that my stamina is a little better. After my surgery they left a heplock in but took the IV out, so no more fluids going in. I was taking ice chips right away but I was also very nauseated. I did not have a catheter so output was measured by a 'hat' in the toilet. The first shift of nursing did not track what I was drinking at all, and did not track output really because I only got up once and there was no hat in the toilet (and I didn't know there should be one or I would have asked for one). Consequently I got extremely dehydrated but didn't realize that was what was happening. All I knew was that I was feeling sicker and sicker and I just couldn't drink enough water to make my mouth stop feeling so (increasingly) dry, and I kept sleeping instead of being awake and feeling bad. I was sipping as often as I could but it kept making me want to throw up. I only barfed once but the nausea was ever present and really just got worse and worse, and I was terribly weak.
Finally at some point during the night my heart started feeling funny. I couldn't figure out what was going on but I thought, "I'm in the dang hospital, I might as well have someone take a listen." I called the nurse to come in and listen and my heart rate was like 120-ish. My oxygen levels were hovering around 91 so we put the canula back in my nose and it hit me - I was dehydrated! I actually thought about all those survival shows and how they talk about the signs of dehydration and then I finally consciously noticed that I hadn't peed, that my mouth was extremely dry, lips were feeling cracked, and now my heart was racing out of my chest. I asked for an IV, I took some calcium and shortly after I felt a world better than I had before.
Note to self (and to you): Keep the IV going until you're solidly eating and drinking!
 |
| Gluten free roasted cauliflower gnocchi with garlic, prosciutto and parmesan |
I so rarely get this easy kind of time with my friends where there isn't some kind of lengthy planning, timelines, limits and juggling. It was delicious having people come to me and while I couldn't entertain for long, the time was so warmly spent - my heart is really full tonight even if I go to bed with no voice.
Tomorrow, more friends taking Eidie for some adventures, another friend bringing food for dinner and movie night and wine with a friend. I feel like I shouldn't be having this much of a good time when I'm so reliant on people just to help me get through each day- but I am having fun, and I hope they are having fun, too.
My aunt called today to tell me that she thinks she can't go with me on this trip we've been planning for some personal reasons, and I talked with her about seeing past them. I told her that if cancer has taught me anything, it's taught me to learn to receive without guilt, and without feeling that I don't deserve it. I spend a lot of time convinced that people don't know how selfish I really am, that if they knew, they wouldn't love me as much. The truth is that I am as real as I can be in any given moment and that I still draw the most incredible human beings around me.
I told my aunt that she doesn't have to get cancer to learn to receive the gifts that are coming her way just because she has given truly of herself to others. I tell my friends all the time- our friends are reflections of the energy we put out into the world, and that they are exquisite human beings to have pulled us all toward them. I only figured out a few days ago that the same is true of me.
Monday, June 25, 2012
Poop
Today my thoughts are mainly around pooping. How to make it happen, being afraid it will hurt when it happens, and funny jokes like, "Nature calls. Hopefully 'doody' will, too."
Okay not ALL my thoughts are about that, and thankfully I've had enough small successes to be convinced I'm not turning into a giant ball of dung from the inside out. My appetite is less today than it was yesterday, I'm more tired and a little woozy which is interesting. But I am eating, I did poop, and I don't think that every single day I absolutely must be better than the day before.
I have no larger existential thoughts right now, I'm really just getting through the right now. Some times I get so uncomfortable- not necessarily pain, but just... the whole 'post surgery' thing, being stiff, achy, not sleeping comfortably, lack-o-poop, anxieties in the night- that I just want to literally crawl out of my skin and run away. And when I think of where I'd run to, I suddenly lose steam because I have no energy to even walk around my house for longer than 10 minutes at a time, much less... hah.. RUN! /snortylaugh
We're getting through it though. Spirits are still pretty high for the most part, and I'm just doing what my body tells me as far as resting/eating/etc. Randy leaves tomorrow and I'm curious about how it will go without his help. I guess Dryden won't be leaving the house until his dad gets back. I hope that Eidie gets to go hang out with friends and do fun things because while she's being very tolerant of all of this, she's certainly saucy about listening and I literally physically can not tell her more than a couple of times, and I certainly can't answer her calls from another room.
My voice is better today, I'm trying not to use it too much. I'm bored, but I don't want to do anything that's going to take up a lot of energy to do so I'm still reading this dreadful book that's killing me (the 4th Game of Thrones book, Feast of Crows - dreadful.) I am hoping the 5th book is worth whatever the 4th is setting up. I guess we'll see.
I want to go get a banana split from Baskin Robbins, my favorite 'hey your body is in recovery from something' ritual. Ugh. I have a ritual! That's awful. LOL!!!
Okay not ALL my thoughts are about that, and thankfully I've had enough small successes to be convinced I'm not turning into a giant ball of dung from the inside out. My appetite is less today than it was yesterday, I'm more tired and a little woozy which is interesting. But I am eating, I did poop, and I don't think that every single day I absolutely must be better than the day before.
I have no larger existential thoughts right now, I'm really just getting through the right now. Some times I get so uncomfortable- not necessarily pain, but just... the whole 'post surgery' thing, being stiff, achy, not sleeping comfortably, lack-o-poop, anxieties in the night- that I just want to literally crawl out of my skin and run away. And when I think of where I'd run to, I suddenly lose steam because I have no energy to even walk around my house for longer than 10 minutes at a time, much less... hah.. RUN! /snortylaugh
We're getting through it though. Spirits are still pretty high for the most part, and I'm just doing what my body tells me as far as resting/eating/etc. Randy leaves tomorrow and I'm curious about how it will go without his help. I guess Dryden won't be leaving the house until his dad gets back. I hope that Eidie gets to go hang out with friends and do fun things because while she's being very tolerant of all of this, she's certainly saucy about listening and I literally physically can not tell her more than a couple of times, and I certainly can't answer her calls from another room.
My voice is better today, I'm trying not to use it too much. I'm bored, but I don't want to do anything that's going to take up a lot of energy to do so I'm still reading this dreadful book that's killing me (the 4th Game of Thrones book, Feast of Crows - dreadful.) I am hoping the 5th book is worth whatever the 4th is setting up. I guess we'll see.
I want to go get a banana split from Baskin Robbins, my favorite 'hey your body is in recovery from something' ritual. Ugh. I have a ritual! That's awful. LOL!!!
Sunday, June 24, 2012
Surgery, all done
Surgery is done, yay! I'll write as much as I can but I don't have a lot of stamina yet and (as usual) there's a lot I want to say about it.
First, anyone who says, "this was a piece of cake surgery" is out of their minds. Either that or they have some pretty awful kinds of surgery going on to compare this to. My throat is swollen and stiff, it hurts (between dosages of ibuprofen) to turn my neck, and swallowing is still a learning experience. It feels like my epiglottis doesn't close all the way so whenever I exert myself I make this weird sound because there's nothing there to close that air off from coming back out of my mouth. Hard to explain.
It is entertaining however. I'm in great spirits and I feel like this almost couldn't have gone more smoothly. I had the surgery on Friday at 7:30-12pm and I still have no voice, for the most part. It did start to come back a bit last night but this morning I sound.. well, I don't sound. LOL
If I drink too fast I choke and coughing hurts like a motherf-, mainly because it strains the sore muscles in my neck. My throat inside definitely feels better every day and I am getting stronger, it's seems slow. By other people's accounts about being back at work and whatnot I thought I'd feel a lot better than this. Well you people are just big fat liars! ;) Randy leaves Tuesday and I am glad I have people who can come and stay with me overnight if I need it.
So, surgery, you want the details, right?
Well the bullet points are basically that I wasn't nervous, I remember everything until they knocked me out in the OR. I really had the nicest, warmest people taking care of me, including a nurse from Uganda AND a Filipino nurse named Nel (which was meaningful to me as my great grandmother's name is Nellie and she is also Filipino). Everyone (especially when I was getting ready for surgery) explained everything they were going to do before they did it, which impressed me.
I did get pretty severely dehydrated the first day but we fixed it. The other not so great thing was the sleeping accommodation for Randy was horrible and while I'm used to sleeping on those things for births, it never occurred to me how much they suck until I saw my man trying to get some sleep in one. I had good pain control and still do with ibuprofen which is great because I can't poop from all the stupid narcotics I had, so that's a work in progress. (Hah!) Maybe this coffee will help. ;)
I was shocked when they discharged me because I felt so, so weak but as we made our way home I realized I was more ready than I thought I was. We hobbled into our favorite Pho place for some good Medicine and it definitely fortified me for a while. We got home and Niall was here, Dryden came shortly after, and then we were able to get a quick nap before Eidie got home. She thinks my voice is funny and every time it sort of tunes back in she says, "You got your boice back!" (Yes, boice! lol)
I'm tiring easy, my neck is very swollen and weird looking. The surgeon didn't use stitches, she used glue so it should heal up nicely.
The mass in my neck, at ultrasound, was 1.3cm. When they took it out it was even smaller so she only took out lymph nodes near the mass, rather than on both sides. Yay! I got to keep my lymph nodes, I'm truly glad about that. She even snapped a couple of photos of the thyroid with the mass in it, as well as the nodes, if anyone wants to see them, send me a note and I'll reply with the photos. They're not blood, just meat on a tray, basically. ME-MEAT.
So speaking of which, I was trying to sleep last night and I was just very troubled by the idea that part of my body is now missing, and feeling some anxiety. It hit me that this is a trauma to my body and that while it went SUPER well, it's still a trauma too - not a weepy 'why me' kind of trauma but just an adjustment that needs its own time, too. I'm okay with that. The anxious thoughts are just processing, I know it, but they don't feel good when they're happening. Laying in the dark in the middle of the night wondering if I'm getting an infection, or maybe my neck isn't healing, or my heart is going to stop (all my anxious thoughts now out there for the world to see) sucks. But it passes, and I know it will. My heart will stop when it's darn good and ready to, anxiety isn't going to make it happen sooner or later than that!
I'm looking forward to having food delivered, that alone will make things much easier here I think. Randy is taking the bulk of the load while I'm at about oh, 60% capacity at my best. I do hope I feel better before he leaves too so he doesn't have to worry while he's away- I want him to go and enjoy himself and know that we are over the hump of this cancer situation.
My sweet husband, he wakes up in the night when I so much as move and he says, "Are you okay? Need anything?" before he falls right back into an exhausted sleep. I know this has been a lot for him and he's still got good spirits, smiling and hanging in there. He's my rock and I'd be lost without him - I can't imagine going through all of this with a partner who is less supportive, it would be so much harder.
I had cancer.
Now we wait for the pathology. If the cancer was in my lymph nodes I'll have to do radiation which concerns me more and more as I approach it. I need to do more research I think. It's a risk of getting other people sick, literally risking giving people cancer, if I'm around them and radioactive enough- so it's a serious thing to consider. I don't feel like I need a full body scan. I guess I just need to know more about the pathology before I decide anything really.
Time to rest. Hope you got this far.
First, anyone who says, "this was a piece of cake surgery" is out of their minds. Either that or they have some pretty awful kinds of surgery going on to compare this to. My throat is swollen and stiff, it hurts (between dosages of ibuprofen) to turn my neck, and swallowing is still a learning experience. It feels like my epiglottis doesn't close all the way so whenever I exert myself I make this weird sound because there's nothing there to close that air off from coming back out of my mouth. Hard to explain.
It is entertaining however. I'm in great spirits and I feel like this almost couldn't have gone more smoothly. I had the surgery on Friday at 7:30-12pm and I still have no voice, for the most part. It did start to come back a bit last night but this morning I sound.. well, I don't sound. LOL
If I drink too fast I choke and coughing hurts like a motherf-, mainly because it strains the sore muscles in my neck. My throat inside definitely feels better every day and I am getting stronger, it's seems slow. By other people's accounts about being back at work and whatnot I thought I'd feel a lot better than this. Well you people are just big fat liars! ;) Randy leaves Tuesday and I am glad I have people who can come and stay with me overnight if I need it.
So, surgery, you want the details, right?
Well the bullet points are basically that I wasn't nervous, I remember everything until they knocked me out in the OR. I really had the nicest, warmest people taking care of me, including a nurse from Uganda AND a Filipino nurse named Nel (which was meaningful to me as my great grandmother's name is Nellie and she is also Filipino). Everyone (especially when I was getting ready for surgery) explained everything they were going to do before they did it, which impressed me.
I did get pretty severely dehydrated the first day but we fixed it. The other not so great thing was the sleeping accommodation for Randy was horrible and while I'm used to sleeping on those things for births, it never occurred to me how much they suck until I saw my man trying to get some sleep in one. I had good pain control and still do with ibuprofen which is great because I can't poop from all the stupid narcotics I had, so that's a work in progress. (Hah!) Maybe this coffee will help. ;)
I was shocked when they discharged me because I felt so, so weak but as we made our way home I realized I was more ready than I thought I was. We hobbled into our favorite Pho place for some good Medicine and it definitely fortified me for a while. We got home and Niall was here, Dryden came shortly after, and then we were able to get a quick nap before Eidie got home. She thinks my voice is funny and every time it sort of tunes back in she says, "You got your boice back!" (Yes, boice! lol)
I'm tiring easy, my neck is very swollen and weird looking. The surgeon didn't use stitches, she used glue so it should heal up nicely.
The mass in my neck, at ultrasound, was 1.3cm. When they took it out it was even smaller so she only took out lymph nodes near the mass, rather than on both sides. Yay! I got to keep my lymph nodes, I'm truly glad about that. She even snapped a couple of photos of the thyroid with the mass in it, as well as the nodes, if anyone wants to see them, send me a note and I'll reply with the photos. They're not blood, just meat on a tray, basically. ME-MEAT.
So speaking of which, I was trying to sleep last night and I was just very troubled by the idea that part of my body is now missing, and feeling some anxiety. It hit me that this is a trauma to my body and that while it went SUPER well, it's still a trauma too - not a weepy 'why me' kind of trauma but just an adjustment that needs its own time, too. I'm okay with that. The anxious thoughts are just processing, I know it, but they don't feel good when they're happening. Laying in the dark in the middle of the night wondering if I'm getting an infection, or maybe my neck isn't healing, or my heart is going to stop (all my anxious thoughts now out there for the world to see) sucks. But it passes, and I know it will. My heart will stop when it's darn good and ready to, anxiety isn't going to make it happen sooner or later than that!
I'm looking forward to having food delivered, that alone will make things much easier here I think. Randy is taking the bulk of the load while I'm at about oh, 60% capacity at my best. I do hope I feel better before he leaves too so he doesn't have to worry while he's away- I want him to go and enjoy himself and know that we are over the hump of this cancer situation.
My sweet husband, he wakes up in the night when I so much as move and he says, "Are you okay? Need anything?" before he falls right back into an exhausted sleep. I know this has been a lot for him and he's still got good spirits, smiling and hanging in there. He's my rock and I'd be lost without him - I can't imagine going through all of this with a partner who is less supportive, it would be so much harder.
I had cancer.
Now we wait for the pathology. If the cancer was in my lymph nodes I'll have to do radiation which concerns me more and more as I approach it. I need to do more research I think. It's a risk of getting other people sick, literally risking giving people cancer, if I'm around them and radioactive enough- so it's a serious thing to consider. I don't feel like I need a full body scan. I guess I just need to know more about the pathology before I decide anything really.
Time to rest. Hope you got this far.
Thursday, June 21, 2012
Getting ready
I am positively vibrating with nervous, conscious, excited, nervous, nervous energy. Vibrating! I feel like I drank a bunch of energy drinks and my brain is spinning fast and I can't hold conversations for very long. I can NOT track details. The only thing that exists is what is RIGHT in front of me, right now. Just one thing.
So I have to try to pack. I have to remember to shower and wash my body with that scrubby thing. Got my pals helping me make a list of things to bring with me. Randy's tending the kids- all three kids are going different places. They're all excited about it.
How will I sleep?! I think tomorrow is going to go GREAT. I am not concerned at all, just nervous. It's going to be great. :)
Here's the last peek at my neck as it's looked up till today. Tomorrow, it won't look like this ever again. Weird feeling.
So I have to try to pack. I have to remember to shower and wash my body with that scrubby thing. Got my pals helping me make a list of things to bring with me. Randy's tending the kids- all three kids are going different places. They're all excited about it.
How will I sleep?! I think tomorrow is going to go GREAT. I am not concerned at all, just nervous. It's going to be great. :)
Here's the last peek at my neck as it's looked up till today. Tomorrow, it won't look like this ever again. Weird feeling.
A month later, a new normal
12 hours from now I'll be getting up to get ready to drop Eidie off at Jolene's house, and heading back to Seattle. Less than week from when I was there, I'm going back for surgery. Check in at the 'We Cut You' Hotel is at 6am, and surgery begins at 7:30. It's about 3-4 hours and recovery is 2-4 hours long so by this time tomorrow I should be sitting up in bed with a gluey neck and telling jokes to the nurses in a raspy voice.
Maybe I'll try singing with a sexy voice like Phoebe Bouffet.
I'm nervous about the surgery and not because I think it won't go well, but just because it's surgery. I can get really stuck on the fact that part of my body is going to be removed from me. I'm not a circumcised dude so I never had to really look at this before- the surgeries I've had in the past removed things that weren't supposed to be there anyway. I could get stuck on it but as a birth professional I know that I can wallow and be upset (boy can we make a fat living on wallowing on our wounds!) or I can move into the acceptance that dude, I have cancer, and this is a small price to pay.
I'm all for moving on.
All the same, I know this will sound weird, but I have finally settled into some sort of semblance of identity as a person who has cancer. I've gotten less spontaneous about my need to discuss it, I've worked on my expectations of others. I've learned how to make it funny and not so awkwardly so.
I know who I am with cancer now.
Who will I be afterward? I want to be in curiosity about that but at this moment I feel a little stream of panic inside- I have to adjust again? So soon? I'm on a ship staring at a landscape that will be my new home but nothing is familiar and this ship was starting to get comfy. I don't know if that will make sense but I'm putting it out there anyway- it's just what's real for me right now.
I have my altar items all together and I know I probably won't get my own room until I'm out of surgery, but it will all come with me and be set up for me while I'm there, and when I get home I'll find somewhere accessible for it.
This healing is SOOOO not about having cancer. It's really about me as a person- it's about having the courage to pick up the loose ends and tug them and see where they lead me, and inevitably it's somewhere I knew I was supposed to go. This healing is about keeping me focused on what's ahead rather than on what's behind. It's about cracking my heart open a little more, so that I can love better and deeper - love others, but love myself too.
I hope this new land has peanut butter cookies.
Maybe I'll try singing with a sexy voice like Phoebe Bouffet.
I'm nervous about the surgery and not because I think it won't go well, but just because it's surgery. I can get really stuck on the fact that part of my body is going to be removed from me. I'm not a circumcised dude so I never had to really look at this before- the surgeries I've had in the past removed things that weren't supposed to be there anyway. I could get stuck on it but as a birth professional I know that I can wallow and be upset (boy can we make a fat living on wallowing on our wounds!) or I can move into the acceptance that dude, I have cancer, and this is a small price to pay.
I'm all for moving on.
All the same, I know this will sound weird, but I have finally settled into some sort of semblance of identity as a person who has cancer. I've gotten less spontaneous about my need to discuss it, I've worked on my expectations of others. I've learned how to make it funny and not so awkwardly so.
I know who I am with cancer now.
Who will I be afterward? I want to be in curiosity about that but at this moment I feel a little stream of panic inside- I have to adjust again? So soon? I'm on a ship staring at a landscape that will be my new home but nothing is familiar and this ship was starting to get comfy. I don't know if that will make sense but I'm putting it out there anyway- it's just what's real for me right now.
I have my altar items all together and I know I probably won't get my own room until I'm out of surgery, but it will all come with me and be set up for me while I'm there, and when I get home I'll find somewhere accessible for it.
This healing is SOOOO not about having cancer. It's really about me as a person- it's about having the courage to pick up the loose ends and tug them and see where they lead me, and inevitably it's somewhere I knew I was supposed to go. This healing is about keeping me focused on what's ahead rather than on what's behind. It's about cracking my heart open a little more, so that I can love better and deeper - love others, but love myself too.
I hope this new land has peanut butter cookies.
Reiki, Spirit, Synchronicity, Healing
I don't know that I've written a lot about this (maybe I have, I'm tired lol), but I really think this thyroid cancer is energetic and not a toxicity of my body. I never had a moment of thinking, "What did I do to cause this?" I never felt like something I ate, or was exposed to, was the culprit.
A few years ago I was talking with my friend Cyndi about some relationships I have that are unsatisfying, and I was getting upset as we talked. She asked me to see the energy moving through my body and stopping at each chakra. Up through my root, sacral, solar plexus it moved, the wheels turning in my mind, through my heart where it got a little sticky and up to my throat where it reached a dead. stop. I said, "I can't get it past my throat."
The throat chakra connects us to our self-expression, our creativity, and faith. When we feel and harbor guilt, this chakra is closed, and when we let that open and move past it, we 'open' the throat chakra.
I know that my throat closes up about these relationships. I don't speak my truth, I don't ask for what I need and I get angry when I don't get it. I don't think I've worked harder to be in integrity with myself as I do when I am working on these particular relationships and somehow I don't change, so nothing changes.
When I found out I had a growth in my thyroid I had a vision of a lotus painted on my throat, and I couldn't shake it (and still can't, which is why I had it henna'd on there). The throat chakra looks like this:
Each part represents something and I won't go into it just because I think if it resonates with you, you'll go searching on your own. But there is a part of this chakra that comes from the petals of a lotus and it was just affirming to me that I have some work to do being honest with myself about my feelings, and being honest with some of the people in my life, too. I deserve it, and so do they- and I have to summon the courage to speak those truths and stand by them, as I do in the rest of my life.
When something touches me that is especially healing, the tumor in my throat literally aches. I mean, like aches fiercely like someone flicked it hard. It calls all my attention and is a persistent voice and it tells me that what I am doing is right. My throat, my chakra, and the physical manifestation of how I am in dysfunction, vibrates.
My friend Dennis invited me to a Reiki healing session a few weeks ago and instantly I knew I needed to go. I wouldn't normally go to something like this just because I have to make time for so many other things, I don't tend to do things like this that feed my spirit, with other people, very often. I was a part of a full moon circle a while back that disintegrated and I miss the ritual presence in my life. This felt really important to do, and I couldn't make time for it at the time (all things in Divine timing!) it was definitely on my radar. I felt compelled, the same way I felt compelled to sit in the sanctuary at the church that was hosting an event we attended, and pray for healing for me, and for everyone who the room had ever touched. I am not governed by a set of spiritual rules of how things 'must' be and 'should' be, I let the Divine/God/dess touch me and I respond, no matter the language.
In the midst of this I knew I needed henna and I asked my friend Holly who is an amazing henna artist to assist. She is also friends with Dennis and there seemed to be bit of an interesting circle developing, and we had deep delicious conversation while she blessed me with a healing lotus on my throat.
As she worked I could feel the little growth in there doing its little "Ow, you flicked me!" thing and it was just right. The stain didn't stand out the next day and faded quickly (due to where it's located on the body) and it didn't need to, energetically that lotus is still hanging out on my neck.
She told me the next Reiki circle was coming up and that I should plan to go. This time it felt right and I felt strongly that I needed to be there. I put it in my calendar and it just felt easy and there was no resistance.
Last night I picked up a friend I haven't seen in 15+ years, someone who taught me early about the courage to be authentic, and whose light still shines brighter than anyone can really look at - she is radiant. She is good Medicine for me and I am glad that whatever stirred the pot and allowed her a window back into my life, that she is there again. She is a talisman for speaking my truth too, that being just who you are is good enough, and a blessing to others as well.
We went to the circle and neither of us knew what to expect, having never done it before. I've done work in circles so I knew the basics about holding space, using energy, but I wasn't sure what was going to actually happen. Was it like team building? Were we going to turn to the left, massage shoulders, turn to the right, massage the other person? Would we be crying? I wasn't nervous, I felt excited and ready and that it was right where I should be.
I won't go into the whole thing but I will say that Holly and Dennis both showed up and they had, on New Moon Litha, done a ritual with others where they gathered up sacred objects, charged them with love and healing and bestowed them upon me- and I know that language sounds a little dramatic but that is really how it feels. Precious gems of healing that make me wish I was a kangaroo so I could tuck them safely in my pouch and carry them until they are no longer needed. I was told that they would have 'something' for me but I never expected everything I received, and that only covers the earthly goods that they gave me. It showed me that we each have capacity for Great Love, if we only let it move through us - we can each hold each other in love and healing and all of the other things that we strive for, without it costing us. And that it is okay to make sacrifices for others, but also to be the recipient of the fruit of those sacrifices, which is where I struggle.
I did want to tell my experience on the table. I lay down on the table while about 12 people put their hands on me, or near my body. There were other things going on outside of me, but inside, I felt the growth start to have that pinchy feeling again. People sang, hummed and all of that energy washed over me like a blanket. I was grateful for the singing, singing is how I move this energy of "HolyshitIhavecancer" out of me when it starts to back up. I open my throat (ha!) and I sing as loud as I can. The singing during the session was perfect.
There is something about surrendering to a room full of people you don't know all that well and closing your eyes and letting them touch your body as they wish. No boundaries are crossed, and some people squeezed, some hovered, some massaged, some rocked me back and forth- and it felt like being carried by them. I just lay there and received it and when it was done, I felt a SNAP!, suddenly I was high, high, high on endorphins. My throat was uncomfortably pinchy, very intensely so, and I instinctively wanted to protect with my hand the part of my body that hurt, but I felt like I needed to just be in the experience of it, to not protect it, that it was just right.
We then went on to split into two groups and we did this for each person there. It was a lot of bawdy jokes and laughing, inside jokes, funny stories, and generous amounts of Love and being with each other in an easy, and Sacred way. I did not feel self conscious and slipped right into the stream of it and as I touched people, images came into my mind that I shared with them because it felt like the right thing to do.
In the midst of this day, some of my feelings about the things I need to do were turning and activating action, and today I am sleepy but feeling like I moved forward toward. I'm nervous today but ready for the surgery tomorrow.
Tuesday, June 19, 2012
Cancer, again.
Cancer strikes again- this time in a friend. Leah announced on Facebook today that she has leukemia. I went to high school with Leah, we have common friends, and we've circled around each other for the last several years in common circles. There's good, delicious love between us, even though we barely know each other. I love that. :)
The first reaction I had was to reach out to her, and I did. I encouraged her to not miss out on the gifts that this brings along with the drama, and stress, and worry, and anger, and everything else. I've learned that you can't box up and categorize cancer. It isn't the devil, it just is- whatever it is.
The second reaction I had was to feel very insecure in my understanding of what she's going through. I "just" have thyroid cancer, while she's dealing with something that I imagine is far scarier, and more life threatening. What credential do I imagine I have that allows me to speak as some kind of knowledgeable person about what that might feel like? I started to feel a little tender, that maybe I should keep my mouth shut and let people with 'real' cancer support her, that maybe my thoughts would be dismissed because I'm not really having to fight to live in the same way she is.
Leah was lovely and gracious and touched by my contact and it made me feel a lot better- we all have something profound to give each other and I often underestimate whatever my offerings are in the moment. I wouldn't describe myself as insecure but in new terrain like this, where I don't know the 'rules' (real or imagined), I tend to think that I'm the one who is going to get it wrong and mess things up, rather than the opposite.
I sat with these feelings just noticing them, wondering what new bit of information was going to reveal itself while I picked at the edges of all this discomfort. I realized that Leah and I (and anyone else going through something big) have everything in common.
There's no one right way to be. I don't write my blog to do anything but document what I'm experiencing, thinking, feeling through this. There are things I don't say. I just want to be able to come back and see the truth of what happened to me, and how it landed in my life, and what I did with it.
I liken this to our own personal 9/11. Our nation one day was going along fine, having integrated all of the experiences we had as a country and things seemed normal. Suddenly, a great breaking occurred. It shook us all up and we had to figure out how to be with this new reality. Now we've settled into that new reality but we can never go back to who we were before thousands of people were viciously murdered on our soil. I can never go back to not knowing what it's like to have cancer, to having to tell my kids, and my friends. That experience can't be teased out of me.
So while I don't know what other fighters are going through as they navigate cancer, we have common ground. We want to live, and we have to figure out the best way, for us, in order to accomplish that.
The first reaction I had was to reach out to her, and I did. I encouraged her to not miss out on the gifts that this brings along with the drama, and stress, and worry, and anger, and everything else. I've learned that you can't box up and categorize cancer. It isn't the devil, it just is- whatever it is.
The second reaction I had was to feel very insecure in my understanding of what she's going through. I "just" have thyroid cancer, while she's dealing with something that I imagine is far scarier, and more life threatening. What credential do I imagine I have that allows me to speak as some kind of knowledgeable person about what that might feel like? I started to feel a little tender, that maybe I should keep my mouth shut and let people with 'real' cancer support her, that maybe my thoughts would be dismissed because I'm not really having to fight to live in the same way she is.
Leah was lovely and gracious and touched by my contact and it made me feel a lot better- we all have something profound to give each other and I often underestimate whatever my offerings are in the moment. I wouldn't describe myself as insecure but in new terrain like this, where I don't know the 'rules' (real or imagined), I tend to think that I'm the one who is going to get it wrong and mess things up, rather than the opposite.
I sat with these feelings just noticing them, wondering what new bit of information was going to reveal itself while I picked at the edges of all this discomfort. I realized that Leah and I (and anyone else going through something big) have everything in common.
- We're grieving the life we had, just yesterday, before we knew. Before the "BigBadTerrible" happened to us, life was some kind of normal we were comfortable with. We didn't realize how comfortable we were until the BBT thing revealed itself.
- We don't know what we're doing, and we're doing the best we can in any given moment. Sometimes that looks like a bout of depression. Sometimes it's manic laughter, or singing at the top of ones lungs. Who creates a handbook for life change? No one. Suddenly we're in another country and we don't speak the language, the landmarks aren't something we recognize, and we have to find a way to make a new life here.
- We look around to the people we know and immediately those relationships change too. So not only are we integrating the news ourselves, the pillars of strength that hold us up start to become shaky, some disappear all together, and new ones pop up where we least expect it. How do we get our bearings in this new world when it keeps changing?
- Who ARE we in this new world? We don't get to pick an identity like avatars (otherwise I'd have a lot more tattoos and nicer boobs, for sure), but we do have to wake up every day and decide how we're going to breathe, eat, talk to people, interact in our lives, with this life changing information bubbling inside of us.
- We are learning by fire. We suddenly become pariahs because people don't want to 'catch' whatever it is that afflicts us. Death? Disease? I want none of that! If I stay away, it won't happen to me. The ostrich approach is automatic but it never works- because life still happens around us and to us.
There's no one right way to be. I don't write my blog to do anything but document what I'm experiencing, thinking, feeling through this. There are things I don't say. I just want to be able to come back and see the truth of what happened to me, and how it landed in my life, and what I did with it.
I liken this to our own personal 9/11. Our nation one day was going along fine, having integrated all of the experiences we had as a country and things seemed normal. Suddenly, a great breaking occurred. It shook us all up and we had to figure out how to be with this new reality. Now we've settled into that new reality but we can never go back to who we were before thousands of people were viciously murdered on our soil. I can never go back to not knowing what it's like to have cancer, to having to tell my kids, and my friends. That experience can't be teased out of me.
So while I don't know what other fighters are going through as they navigate cancer, we have common ground. We want to live, and we have to figure out the best way, for us, in order to accomplish that.
Monday, June 18, 2012
Today's report
Wow, what a day. I'm exhausted! It's funny I'm bothering to type this out as I'm just so darn tired, but I want to make sure I record this whole journey and best do it while it's fresh.
Randy and I went to bed too late last night but we woke up on time and managed to get out the door in a timely fashion. We dropped Eidie off at a friend's (who so kindly was up at 5:30am to receive her, and tuck her into bed with her, and both went back to sleep - yay!) and headed out. We had to get the ferry to Seattle and arrived to the clinic with a bit of extra time. Good thing; Randy dropped me off at the front door and said he'd meet me. I got down to Radiology before he did and I was too scared to check in without him there so I paced, and paced, and paced. I was afraid if I checked in and he wasn't there that they'd call me back and I'd be alone. But he made it, we checked in and shortly after a quiet gentleman called me back.
We walked back and I wanted to make sure I stayed grounded. I read the names on the labeled doors as we passed them so that I wouldn't get all floaty. He led me to a room with a bed and an ultrasound machine and invited me to hop up. I looked around and noticed a distinct lack of biopsy trays.... I started to hope!
It took me about ten minutes to relax but when I finally did, I literally kept falling asleep while he was doing the ultrasound of my neck. I told Randy it was like having a warm, slimy neck massage. Haha! I got to watch part of it and I didn't recognize anything I saw except for my carotid artery, jugular vein, windpipe, thyroid and the little orb that caused this whole mess. He got all his pictures and said he'd be right back. I wiped all that goo from my neck and he came back and said, "We don't need a biopsy, you're free to go." I was so excited I made him high-five me!
Suddenly I didn't have any more stress- we were going to meet with the surgeon which was what I was waiting for, for weeks really, and I was ready to talk with her, ready to schedule. We got a quick snack and arrived early to the appointment.
Dr. H came recommended from my own doc who had met her once and also heard really positive things from her patients. I chose her based solely on that- I had a good strong feeling about her and in person, she did not disappoint. She was very energetic but in a grounded way, she was connected to both Randy and me as people and not just an item on her docket for the day. She gave a presentation (so to speak) of what we were going to do in the surgery, my recovery and my future care. She suggested that if the cancer hasn't spread past the thyroid and that the cancer in the thyroid looks well placed, that I might not even have to have radiation. NICE! She works closely with my endocrinologist and does about 100 of these surgeries per year.
I had watched a video of the surgery itself and done boat loads of research so we had an efficient conversation which really affirmed that we were on the same page.
"Do you like what you do?" I asked her, like I ask anyone who is going to be in my home, or touch my body, or my kids, or my husband, or otherwise leave their energetic mark in my life. "Oh, yes. I love it. I love it a lot." It is so clear that she does, she lights up when she talks about it and calls the surgery 'elegant'. I believe that she believes it is. I told her how important it is to me that she loves what she does and takes seriously the sacred contract we're making to go into the OR together. She nodded emphatically, she understood what I was saying and agreed with me. "I take this very seriously. I take my time during the surgery and I do not rush, even though I've done so many of them. I go to bed early, I eat well the day before, I keep my stress low." She takes care of herself so that she can take care of me, in other words. I'll take it.
I met with a few other nurses to do the pre-op instructions and then we left, waiting to hear from her office on when we'd schedule the surgery. Randy has to go out of town for a few days next week so we were shooting to have it done as soon as possible after he gets back, so probably mid-July.
I left the clinic feeling really good about everything. We'll check in on the day of surgery, do a couple of hours of pre-op stuff. The surgery itself takes approximately 3 hours and then I'll be in recovery for 2-4 hours. Unlike my ovarian tumor removal, I won't have any interaction with my digestive system/bowels so I won't be denied food/drink right after surgery. One of the most awful things about that other surgery was having the horribly dry mouth after waking up and everyone refusing me water. It was really terrible to feel so groggy and out of control and to be really suffering without water. I didn't want to feel that again and she assured me that as soon as I ask for water or food, someone will bring it. Yes! Randy will be able to be present for some of the recovery process and then they'll take me to my room where I'll stay the night, and then go home the next day. Done!
I'll be a little hoarse and probably tired for a while, up to a couple of weeks from what I understand. Randy's leaving on Tuesday for a trip he's been looking forward to so I'm working with my friends to see if anyone wants to help me out with some kid activities, or food drops, or a sleep over. Why not make it fun, and have a little help in the process?
I can't believe it's going to happen on Friday!
Edited to add:
Can't believe I forgot to add this! I must be tired. ;) On our way home we were just pulling onto the ferry when the phone rang- it was the surgeon's office. She said, "Dr. H. can fit you in on Friday if that works for you. She'll come in on her day off and do your surgery so you don't have to wait until late July." I was stunned! How do you just decide on the spur of the moment to have surgery four days later? Randy and I chatted briefly and said, "Let's do it!"
I'm still reeling from how smoothly today went, with markers of good news all along the way. It confuses me sometimes, how am I getting such a smooth ride? People say that I have put this energy into the Universe and I wonder (really, honestly wonder) what I do differently from any one else. I don't see it, but I must be racking up points somewhere to be getting all this harvest right now. I'm learning to say, "Yes!" when people offer me help and support, and working on not feeling guilty, or like I owe something for it. It's very, very hard.
I think this is a great opportunity to learn about receiving. Thank you, cancer! (Nowgetout.)
Randy and I went to bed too late last night but we woke up on time and managed to get out the door in a timely fashion. We dropped Eidie off at a friend's (who so kindly was up at 5:30am to receive her, and tuck her into bed with her, and both went back to sleep - yay!) and headed out. We had to get the ferry to Seattle and arrived to the clinic with a bit of extra time. Good thing; Randy dropped me off at the front door and said he'd meet me. I got down to Radiology before he did and I was too scared to check in without him there so I paced, and paced, and paced. I was afraid if I checked in and he wasn't there that they'd call me back and I'd be alone. But he made it, we checked in and shortly after a quiet gentleman called me back.
We walked back and I wanted to make sure I stayed grounded. I read the names on the labeled doors as we passed them so that I wouldn't get all floaty. He led me to a room with a bed and an ultrasound machine and invited me to hop up. I looked around and noticed a distinct lack of biopsy trays.... I started to hope!
It took me about ten minutes to relax but when I finally did, I literally kept falling asleep while he was doing the ultrasound of my neck. I told Randy it was like having a warm, slimy neck massage. Haha! I got to watch part of it and I didn't recognize anything I saw except for my carotid artery, jugular vein, windpipe, thyroid and the little orb that caused this whole mess. He got all his pictures and said he'd be right back. I wiped all that goo from my neck and he came back and said, "We don't need a biopsy, you're free to go." I was so excited I made him high-five me!
Suddenly I didn't have any more stress- we were going to meet with the surgeon which was what I was waiting for, for weeks really, and I was ready to talk with her, ready to schedule. We got a quick snack and arrived early to the appointment.
Dr. H came recommended from my own doc who had met her once and also heard really positive things from her patients. I chose her based solely on that- I had a good strong feeling about her and in person, she did not disappoint. She was very energetic but in a grounded way, she was connected to both Randy and me as people and not just an item on her docket for the day. She gave a presentation (so to speak) of what we were going to do in the surgery, my recovery and my future care. She suggested that if the cancer hasn't spread past the thyroid and that the cancer in the thyroid looks well placed, that I might not even have to have radiation. NICE! She works closely with my endocrinologist and does about 100 of these surgeries per year.
I had watched a video of the surgery itself and done boat loads of research so we had an efficient conversation which really affirmed that we were on the same page.
"Do you like what you do?" I asked her, like I ask anyone who is going to be in my home, or touch my body, or my kids, or my husband, or otherwise leave their energetic mark in my life. "Oh, yes. I love it. I love it a lot." It is so clear that she does, she lights up when she talks about it and calls the surgery 'elegant'. I believe that she believes it is. I told her how important it is to me that she loves what she does and takes seriously the sacred contract we're making to go into the OR together. She nodded emphatically, she understood what I was saying and agreed with me. "I take this very seriously. I take my time during the surgery and I do not rush, even though I've done so many of them. I go to bed early, I eat well the day before, I keep my stress low." She takes care of herself so that she can take care of me, in other words. I'll take it.
I met with a few other nurses to do the pre-op instructions and then we left, waiting to hear from her office on when we'd schedule the surgery. Randy has to go out of town for a few days next week so we were shooting to have it done as soon as possible after he gets back, so probably mid-July.
I left the clinic feeling really good about everything. We'll check in on the day of surgery, do a couple of hours of pre-op stuff. The surgery itself takes approximately 3 hours and then I'll be in recovery for 2-4 hours. Unlike my ovarian tumor removal, I won't have any interaction with my digestive system/bowels so I won't be denied food/drink right after surgery. One of the most awful things about that other surgery was having the horribly dry mouth after waking up and everyone refusing me water. It was really terrible to feel so groggy and out of control and to be really suffering without water. I didn't want to feel that again and she assured me that as soon as I ask for water or food, someone will bring it. Yes! Randy will be able to be present for some of the recovery process and then they'll take me to my room where I'll stay the night, and then go home the next day. Done!
I'll be a little hoarse and probably tired for a while, up to a couple of weeks from what I understand. Randy's leaving on Tuesday for a trip he's been looking forward to so I'm working with my friends to see if anyone wants to help me out with some kid activities, or food drops, or a sleep over. Why not make it fun, and have a little help in the process?
I can't believe it's going to happen on Friday!
Edited to add:
Can't believe I forgot to add this! I must be tired. ;) On our way home we were just pulling onto the ferry when the phone rang- it was the surgeon's office. She said, "Dr. H. can fit you in on Friday if that works for you. She'll come in on her day off and do your surgery so you don't have to wait until late July." I was stunned! How do you just decide on the spur of the moment to have surgery four days later? Randy and I chatted briefly and said, "Let's do it!"
I'm still reeling from how smoothly today went, with markers of good news all along the way. It confuses me sometimes, how am I getting such a smooth ride? People say that I have put this energy into the Universe and I wonder (really, honestly wonder) what I do differently from any one else. I don't see it, but I must be racking up points somewhere to be getting all this harvest right now. I'm learning to say, "Yes!" when people offer me help and support, and working on not feeling guilty, or like I owe something for it. It's very, very hard.
I think this is a great opportunity to learn about receiving. Thank you, cancer! (Nowgetout.)
Sunday, June 17, 2012
Butterflies
Butterflies are loose in my belly.
Tomorrow morning are my appointments. First I meet with radiology to have the ultrasound of the compartments of my neck. They'll pay close attention to my lymph nodes to see if anything there looks suspect. If something does, they'll want to do a fine-needle-aspiration (FNA).
Today it hit me: I don't have to say yes to the biopsy. I'm nervous about the biopsy but I wouldn't say no just for that. However, I think they're going to have to really sell me on this whole "You need more needles in your neck when we already know you have cancer" thing. I'm starting to feel more like I need to be in charge of my care.
Here's my thinking: If something in my ultrasound makes the radiologist take pause, given that I already know I have cancer that will, if it hasn't already, go into my lymph nodes- wouldn't it be prudent to take out anything that looks worrisome? Why would we leave it in?
That seems to logical to make sense in a medical setting, if that makes any sense. Often the things that seem so obviously simple generally aren't. I wonder how often they ultrasound something that looks nefarious to find that they couldn't see anything wrong with it? That would be good information.
They probably should have scheduled a little more time with me than they probably did- they're really going to have to sell me on this whole thing if they think they need a biopsy.
All hoping is pointed toward my lymph nodes looking fine and them not needing anything from them, but I'm just too prepared for the alternative.
After those shenanigans I will meet my surgeon for the first time. My family practice doc recommended her and said that she's heard great things about her skills but that her patients love her. Now we're talking. Give me someone skilled, who loves what she does and makes people around her feel good. I think Randy and I will go over our questions again on the way there. There's a lot she won't be able to answer just because she won't probably be able to see my radiology report (maybe they can rush it? I don't know), but we can get the gist of it.
I've poked around a little online for some community and I'm finding some good ones. It really, really makes me feel less worried that I'm making a big deal out of nothing, or dramatizing this, when I read what other people are feeling, experiencing, and how they are processing it. I also see that I have a lot to learn, the learning curve isn't super steep I don't think but I really don't want my brain full of thyroid facts. I really don't.
I would so much rather just go along for the ride. I say that now- but man, learning a whole new body system while experiencing all of this cancer emotional roller coaster seems ridiculous. However, I also know that no one will advocate better for my care than me, and I need to be prepared to do that. I find that I absorb bits of info here and there by being a part of these communities and I can offer some encouragement and support and understanding even if I don't know exactly what people are going through. I've never been hypo or hyperthyroid, or had some sort of disease of my thyroid. I have had an excellent quality of life with my little thyroid and I'm genuinely sad to lose it.
There is one woman on one of the communities I'm on- she's in her upper 60's and she is just the picture of genuine care and compassion for every person who is involved there. She is very knowledgeable but the most profound thing I've seen her say, time and again, is how grateful she is every day when she takes her thyroid replacement medication. Grateful.
She's alive, and feeling well. She lives in a time when thyroid replacement isn't a complex thing to accomplish, it's very safe and well studied. She's grateful to be taking her meds every day.
What a whopper that was when I read it. I do not struggle with gratitude, I'm pretty quick to be swept away by it honestly. I'm grateful to get to experience cancer in this way- surrounded by so many people who are supportive and who love me, with a cancer that is easily treated, and with hopefully not too big a change in my quality of life. Still, gratitude for my medication, it's like a happy pill every day!
I am so deeply inspired by that and I know that I will integrate her wisdom into my experience too.
I am grateful to have an endocrinologist that I like, who listens and sees me as an individual.
I am grateful to have been recommended a surgeon who was available for my surgery!
I'm grateful to have drawn skilled people around me who seem to like what they do.
I'm grateful that Randy's job allows him to work from home when he needs to, that he won't have to miss work to care for me and that he has the flexibility he needs to take time off if needed.
I'm grateful for the support that his job has shown us.
I'm grateful to my friends for checking in with me and sending me love, showing up for m dinner and my fundraisers and asking me how I'm doing. It means a lot.
I'm so very, very grateful for good health insurance.
I'm grateful for my husband who inspires me to never give up- that I can take breaks, but I must keep on moving forward. Who, when I say, "I need to get my eating under control and start some kind of exercise routine," says, "I'll do it with you." (Words do not capture the depth of my love for this man - he who has taken me in his arms and been a safe place for me to fall apart since I was 14 years old.)
I could go on and on, and I just want to thank this woman who might never see it for telling her truth and letting me share it.
I need to go to bed, it's an early morning tomorrow! I have to get up in 6 hours to get ready, get the girl off to a friend's at 5:30-5:45am or so, and hustle up to the ferry and hope we beat the commuters.
I think I'll get to schedule my surgery tomorrow. Wow.
Tomorrow morning are my appointments. First I meet with radiology to have the ultrasound of the compartments of my neck. They'll pay close attention to my lymph nodes to see if anything there looks suspect. If something does, they'll want to do a fine-needle-aspiration (FNA).
Today it hit me: I don't have to say yes to the biopsy. I'm nervous about the biopsy but I wouldn't say no just for that. However, I think they're going to have to really sell me on this whole "You need more needles in your neck when we already know you have cancer" thing. I'm starting to feel more like I need to be in charge of my care.
Here's my thinking: If something in my ultrasound makes the radiologist take pause, given that I already know I have cancer that will, if it hasn't already, go into my lymph nodes- wouldn't it be prudent to take out anything that looks worrisome? Why would we leave it in?
That seems to logical to make sense in a medical setting, if that makes any sense. Often the things that seem so obviously simple generally aren't. I wonder how often they ultrasound something that looks nefarious to find that they couldn't see anything wrong with it? That would be good information.
They probably should have scheduled a little more time with me than they probably did- they're really going to have to sell me on this whole thing if they think they need a biopsy.
All hoping is pointed toward my lymph nodes looking fine and them not needing anything from them, but I'm just too prepared for the alternative.
After those shenanigans I will meet my surgeon for the first time. My family practice doc recommended her and said that she's heard great things about her skills but that her patients love her. Now we're talking. Give me someone skilled, who loves what she does and makes people around her feel good. I think Randy and I will go over our questions again on the way there. There's a lot she won't be able to answer just because she won't probably be able to see my radiology report (maybe they can rush it? I don't know), but we can get the gist of it.
I've poked around a little online for some community and I'm finding some good ones. It really, really makes me feel less worried that I'm making a big deal out of nothing, or dramatizing this, when I read what other people are feeling, experiencing, and how they are processing it. I also see that I have a lot to learn, the learning curve isn't super steep I don't think but I really don't want my brain full of thyroid facts. I really don't.
I would so much rather just go along for the ride. I say that now- but man, learning a whole new body system while experiencing all of this cancer emotional roller coaster seems ridiculous. However, I also know that no one will advocate better for my care than me, and I need to be prepared to do that. I find that I absorb bits of info here and there by being a part of these communities and I can offer some encouragement and support and understanding even if I don't know exactly what people are going through. I've never been hypo or hyperthyroid, or had some sort of disease of my thyroid. I have had an excellent quality of life with my little thyroid and I'm genuinely sad to lose it.
There is one woman on one of the communities I'm on- she's in her upper 60's and she is just the picture of genuine care and compassion for every person who is involved there. She is very knowledgeable but the most profound thing I've seen her say, time and again, is how grateful she is every day when she takes her thyroid replacement medication. Grateful.
She's alive, and feeling well. She lives in a time when thyroid replacement isn't a complex thing to accomplish, it's very safe and well studied. She's grateful to be taking her meds every day.
What a whopper that was when I read it. I do not struggle with gratitude, I'm pretty quick to be swept away by it honestly. I'm grateful to get to experience cancer in this way- surrounded by so many people who are supportive and who love me, with a cancer that is easily treated, and with hopefully not too big a change in my quality of life. Still, gratitude for my medication, it's like a happy pill every day!
I am so deeply inspired by that and I know that I will integrate her wisdom into my experience too.
I am grateful to have an endocrinologist that I like, who listens and sees me as an individual.
I am grateful to have been recommended a surgeon who was available for my surgery!
I'm grateful to have drawn skilled people around me who seem to like what they do.
I'm grateful that Randy's job allows him to work from home when he needs to, that he won't have to miss work to care for me and that he has the flexibility he needs to take time off if needed.
I'm grateful for the support that his job has shown us.
I'm grateful to my friends for checking in with me and sending me love, showing up for m dinner and my fundraisers and asking me how I'm doing. It means a lot.
I'm so very, very grateful for good health insurance.
I'm grateful for my husband who inspires me to never give up- that I can take breaks, but I must keep on moving forward. Who, when I say, "I need to get my eating under control and start some kind of exercise routine," says, "I'll do it with you." (Words do not capture the depth of my love for this man - he who has taken me in his arms and been a safe place for me to fall apart since I was 14 years old.)
I could go on and on, and I just want to thank this woman who might never see it for telling her truth and letting me share it.
I need to go to bed, it's an early morning tomorrow! I have to get up in 6 hours to get ready, get the girl off to a friend's at 5:30-5:45am or so, and hustle up to the ferry and hope we beat the commuters.
I think I'll get to schedule my surgery tomorrow. Wow.
Friday, June 15, 2012
Lord Ganesha, Remover of Obstacles
I have had one weepy day today, and for such good, happy reasons. This week has been sort of a cataclysm of events coming together to ensure that I get my cancer treatment sooner, and thus, go to Africa. That's the short version.
The longer version is that I was originally planning to schedule my surgery for mid July, well after my two late-June clients were due to have babies so that I wouldn't miss their births. I'm supposed to have radiation treatment about a month after that, and probably won't feel well for weeks afterward as we get my new thyroid medications adjusted to suit my personal body. It was looking a bit hairy for me to go to Shanti on this timeline. In the midst of my treatments, I need to schedule the fundraisers that are happening and make time for them, as well as the henna events I have already paid to do or been paid to attend.
The longer version is that I was originally planning to schedule my surgery for mid July, well after my two late-June clients were due to have babies so that I wouldn't miss their births. I'm supposed to have radiation treatment about a month after that, and probably won't feel well for weeks afterward as we get my new thyroid medications adjusted to suit my personal body. It was looking a bit hairy for me to go to Shanti on this timeline. In the midst of my treatments, I need to schedule the fundraisers that are happening and make time for them, as well as the henna events I have already paid to do or been paid to attend.
It was feeling like a lot. Too much. I started to reconsider going to Shanti. Realistically I was struggling with prioritizing the cancer treatment over what my heart told me to do, what my Dreams led me to. I was very conflicted.
Monday morning, I got to have two quick, lovely births- both of my late June clients! Suddenly I can move my surgery date up by quite a bit if I want to and it's even occurred before I meet with the surgeon so I don't have to deal with calling back, rescheduling, etc. So convenient! My third birth happened yesterday- another fast, peaceful waterbirth at home - and now I'm totally off call. What a relief! I started to think that now that I could move my surgery up by several weeks, maybe I'd be well enough to go to Shanti after all. But I was feeling very discouraged about getting stalled at about $850 out of the $5000 I am trying to raise, and uninspired to convince people to chip in more.
I decided to just turn toward Shanti until I got clear information to do otherwise. I posted the YouCaring link to my blog and one of Randy's co-workers and Randy and I started chitchatting about the trip and joking around.
Suddenly, $1500 dropped into my YouCaring account. No joke- FIFTEEN HUNDRED DOLLARS. Today, another $470.
So, to put it all together, suddenly, in that one motion, I went from giving up Africa and worrying about clients and trying to work around treatments, to no more worries about clients, and the timing now totally works for me to go.
I can't write it down and articulate how it feels to be able to look back and see things click into place - in this place of being between the worlds, with cancer - do I get a future? Of course I do, here it is, happening in the present! It's happening NOW.
It made me think of Lord Ganesha, Remover of Obstacles. I love archetypes. They connect me to the Divine, it's a facet of the Spirit that makes up all of us, and everything. Today, Lord Ganesha came to my mind and heart over and over as I thought of his great love and compassionate ear, and his great axe to cleave away the things that would get in our way of success.
I feel touched by this, deeply, and Divinely touched with assurances that whatever is meant to be, will be given every opportunity to happen- whether we like it, or not. This time around, I get lucky. I get obstacles to Shanti removed.
What's totally interesting is that after I dreamed about Shanti, the first time the word came up was in a video of an elephant that plays music. The next was about the clinic where I'm going. AWESOME.
On to cancer.
I had a revelation today that might be controversial but I'm going to say it anyway. First, I want to say that the cancer I'm experiencing is something very curious to me. It causes me to wonder, inquire and puzzle. Cancer? Really??
I was puzzling over the fact that I haven't felt a lot of anger about this, and haven't spent a moment really angry AT the cancer. I realized that, contrary to how I've experienced other people talking about cancer, I do not feel that it is 'something else'. It's not an invader, or a parasite. It would require the cancer to be made of something other than my own cells.
This cancer is OF me. It's a voice of my body, that something is energetically out of place, out of control, not acting within the boundaries of health and alignment. The cells that make up my cancer are my own cells. They are not a foreign body injected into me.
Surely, as I create these cells, I can release them. Maybe it will take a surgery to do so, but I bless the strong voice of my body that it can tell me something isn't right. That is in itself, a miracle. Cells talk to each other, they coordinate with each other, create complex systems and live, replicate, die, in that system. The complexity boggles my mind!
Today I was henna'd by a friend, and I finally got the design I'd always seen on my throat- a lotus. I am not particularly Eastern in my spiritual philosophy, maybe a little, but the only henna designs I've ever seen as 'treatment' for my cancer were chakras or lotuses.
A lotus is a beautiful flower that rises from the mud, to bloom on the surface. Water is symbolic of our creativity and intuition. The stalk of a lotus is easy to bend, yet hard to break.
A lotus is a beautiful flower that rises from the mud, to bloom on the surface. Water is symbolic of our creativity and intuition. The stalk of a lotus is easy to bend, yet hard to break.
From the mud, rises something beautiful - and that is how I feel about cancer.
Thursday, June 14, 2012
Bad form
It must be bad form to be at the birth of a friend's baby, a delicious waterbirth, and talking about cancer.
It feels like only happy, hopeful things should be discussed. And in a weird way, talking about it is happy and hopeful because the treatment is relatively (and I mean, relatively to other cancer treatments) simple, and it is 'only' thyroid cancer, so that's good, right? Thinking about a cancer free future should feel happy, but it's dusted with the knowledge that I would only be appreciating a cancer free 'future' if I didn't have a cancerous 'present'.
It also must be bad form to be at this birth thinking, "Oh shit. Now there's no one else to focus on. Now it's all about treatment." That feels dark, and selfish, but it's what I thought after we got mama settled in nursing her babe - walking down the hallway. I don't like it, but it's what's true.
So Monday... tick-tock.. tick-tock.
I hope this is like my eyebrows in modeling school.
It feels like only happy, hopeful things should be discussed. And in a weird way, talking about it is happy and hopeful because the treatment is relatively (and I mean, relatively to other cancer treatments) simple, and it is 'only' thyroid cancer, so that's good, right? Thinking about a cancer free future should feel happy, but it's dusted with the knowledge that I would only be appreciating a cancer free 'future' if I didn't have a cancerous 'present'.
It also must be bad form to be at this birth thinking, "Oh shit. Now there's no one else to focus on. Now it's all about treatment." That feels dark, and selfish, but it's what I thought after we got mama settled in nursing her babe - walking down the hallway. I don't like it, but it's what's true.
So Monday... tick-tock.. tick-tock.
I hope this is like my eyebrows in modeling school.
Shifting
Last night I felt like I just crashed. I slept a fevered sleep, many dreams, lots of just moving around in the bed, feeling unsettled. I still feel unsettled and I wonder, am I getting sick? Is there something going on in my body I don't know?
I fancy myself to be someone who is pretty darn knowledgeable about my body. Being a birth worker, I am realizing that 'my body' pretty much amounts to everything below my waist and above my knees. I can talk to you all day about my uterus and ovaries and all the attached bits because I've spent my life (literally) learning about them, protective of them for myself and other women, and seeing the amazing fruit they produce come into the world.
It's startling to have something come up in my body that I would never, ever have expected. Cancer for one... but in my neck? Really? It makes me wonder what else is going on which I'm sure is just a natural course of this whole situation but it's not like I need more things to be anxious about.
So when I start to feel queasy, or dizzy, or my hands shake, or my heart palpitates, I just wonder. What else is going on? It's nothing more than curiosity, I'm not dreading it or imagining terrible things- just seeing on a cellular level, those little beings talking to each other, living and dying all on their own - synapses that connect, fire, reconnect, fire again. It's fascinating. I wonder what cancer looks like- I want to see the thyroid gland after they take it out, I want to know what the cancer looks like. I am in awe that bodies can do what they do and even when things don't go the way we want, what does THAT look like, too?
Right before I found out I have cancer, I was rejected from doing henna at two events I was super excited about. I had no idea ahead of time it would happen and they both happened within 24 hours of each other.
Then I found out and I started trying to schedule my cancer treatment around my existing schedule (it seems so silly but what else am I supposed to do, drop my life for cancer? I think not.) I had been thinking about taking a leave of absence from the board of the food co-op for a little while as I've worked for 4 years straight without one- and then I found out I had cancer and it seemed obvious that it is exactly what I need to do.
I was trying to schedule my surgery around the birth of my two doula clients and then suddenly they both gave birth the same day- is the Universe trying to tell me something here? Something like... oh, I don't know... get treatment??? I can't help but think so.
While I"m bummed to lose the fun and income of those two events, everything else has shifted so nicely to accomodate what I have to do this summer. Which means I can have my surgery sooner.
Let me tell you a secret: I dont want the damn surgery. I don't want it at all. People keep saying, "At least it's just a surgery and then it's done!" You know what - it's SURGERY. Having had a few, I know what that means. I've never been intubated but I remember waking up from one surgery where I was put out and it was horrible, just horrible. How can I be excited about that?
This is the part that I'm butting up against now- it's one thing to say you have cancer, it's another to face all the crap you're going to have to do to get rid of it. Yes, I know. I dont need chemo, what am I crying about? Well - this is my body, and I don't want anyone cutting on it. I don't want to lose bits of myself. I don't want to have cancer either but at least that cancer right now is playing fairly nicely and not making too much of a fuss.
It's funny how in an intense situation, the most intense thing, even if it's not the most important thing, gets the most attention. Maybe that's a survival mechanism, otherwise I'm back to thinking about having cancer.
I fancy myself to be someone who is pretty darn knowledgeable about my body. Being a birth worker, I am realizing that 'my body' pretty much amounts to everything below my waist and above my knees. I can talk to you all day about my uterus and ovaries and all the attached bits because I've spent my life (literally) learning about them, protective of them for myself and other women, and seeing the amazing fruit they produce come into the world.
It's startling to have something come up in my body that I would never, ever have expected. Cancer for one... but in my neck? Really? It makes me wonder what else is going on which I'm sure is just a natural course of this whole situation but it's not like I need more things to be anxious about.
So when I start to feel queasy, or dizzy, or my hands shake, or my heart palpitates, I just wonder. What else is going on? It's nothing more than curiosity, I'm not dreading it or imagining terrible things- just seeing on a cellular level, those little beings talking to each other, living and dying all on their own - synapses that connect, fire, reconnect, fire again. It's fascinating. I wonder what cancer looks like- I want to see the thyroid gland after they take it out, I want to know what the cancer looks like. I am in awe that bodies can do what they do and even when things don't go the way we want, what does THAT look like, too?
Right before I found out I have cancer, I was rejected from doing henna at two events I was super excited about. I had no idea ahead of time it would happen and they both happened within 24 hours of each other.
Then I found out and I started trying to schedule my cancer treatment around my existing schedule (it seems so silly but what else am I supposed to do, drop my life for cancer? I think not.) I had been thinking about taking a leave of absence from the board of the food co-op for a little while as I've worked for 4 years straight without one- and then I found out I had cancer and it seemed obvious that it is exactly what I need to do.
I was trying to schedule my surgery around the birth of my two doula clients and then suddenly they both gave birth the same day- is the Universe trying to tell me something here? Something like... oh, I don't know... get treatment??? I can't help but think so.
While I"m bummed to lose the fun and income of those two events, everything else has shifted so nicely to accomodate what I have to do this summer. Which means I can have my surgery sooner.
Let me tell you a secret: I dont want the damn surgery. I don't want it at all. People keep saying, "At least it's just a surgery and then it's done!" You know what - it's SURGERY. Having had a few, I know what that means. I've never been intubated but I remember waking up from one surgery where I was put out and it was horrible, just horrible. How can I be excited about that?
This is the part that I'm butting up against now- it's one thing to say you have cancer, it's another to face all the crap you're going to have to do to get rid of it. Yes, I know. I dont need chemo, what am I crying about? Well - this is my body, and I don't want anyone cutting on it. I don't want to lose bits of myself. I don't want to have cancer either but at least that cancer right now is playing fairly nicely and not making too much of a fuss.
It's funny how in an intense situation, the most intense thing, even if it's not the most important thing, gets the most attention. Maybe that's a survival mechanism, otherwise I'm back to thinking about having cancer.
Tuesday, June 12, 2012
Two births and a surgery
When I met with the endocrinologist (Dr. S.), I felt like such an idiot asking him if my cancer surgery could wait (!!!!) until after the mamas I am on call for gave birth. Two mamas due at the end of June which meant I needed to be available to them until mid-July (42 weeks!), so could we please make my cancer treatment convenient to my schedule? It was important to me to not have to withdraw from these births. Dr. S. said that it would be up to the surgeon to schedule it really, I'd have to chat with her about it. It made me feel better that my cancer is so conveniently slow-growing that I can make it fit within my life, rather than having to drop everything to accommodate something that is trying to threaten my life.
Sunday night I had this urge to henna my hand which my friend, the midwife, and I joke 'starts labors'. I posted on Facebook about wanting to see some babies out and really thought about my midwife friend because she's now a few days past her due date and has for weeks, been eager to meet her babe. I figured I'd just help things along in my own way.
I woke up to not one, but two women in labor- and neither one of them was my friend! I went and witnessed the birth of two lovely human beings with shiny eyes and darling cries, and hugged their strong amazing parents while they celebrated the transition of their families with me.
So now this means that I can have the surgery sooner than mid-July. I'm relieved and scared about this information. Let's get this show on the road/Holycrap. I don't want surgery. But then, I don't want cancer either, and 'not wanting' didn't help me there, did it. So let's just get this crap done.
I loved being immersed so heavily into something else. The distraction that my work, whether it's co-op or births or house work, affords me is really priceless. I still found myself fighting this urge to say to the midwife attending the second birth, "I have cancer". A part of me wants to see how she'd react. A part of me wants to just inject it out there because it feels like a bubble inside of me, and maybe the pressure will release. A part of me still doesn't believe it and saying it still sounds so weird, like waking up one day and discovering that somehow, you can fluently speak another language.
I wrote last about feeling sort of invisible- and I did get some feedback and I appreciate that. I sat with it today and I what I want to say is that it's not that I think no one cares- it's that I'm vulnerable right now. I'm sensitive, and I'm soft, and vulnerable. This stupid cancer has exposed my soft little belly and every little bur pokes me in tender places. I give myself the grace and permission to just do what I need to do and say the things, even silly things, in retrospect, that I need to say in the moment.
Some days I want people to call me, email me, whatever. Some days I don't want to think about it. I don't expect anyone to be able to read my mind, and I hope that it's understandable that I am just a little crazy right now. When treading water, some time you keep your nose up, and sometimes you blow bubbles.
How am I feeling physically? My lymph nodes bother me (both sides of my neck pretty consistently now) and I just choose to believe that they're enlarged and cranky because they know there's an intruder. I do not want a biopsy. Randy says I'm dreading it as if I know it's giong to happen and frankly I think that's easier than hoping it won't happen, and being disappointed. I'd much rather be surprised the other way, if that makes sense.
Some days when I'm talking I can feel my voice sounding hoarse, and I clear my throat a lot. It's not every day, just some days. Today my lymph nodes feel enlarged like I'm getting a cold, only.. I don't have a cold. That achy pressury feeling that will now and for the rest of my life be a reminder that cancer is in me, was in me - because now it makes me worry that it has spread there, and this cancer does recur.
I don't even know what to say about that. I wonder if I were to get this same cancer again if I'd feel so ground into little bits about it, or if it would be more like, "Okay, whatever, been there, done that." I hope I never have to find out.
Sunday night I had this urge to henna my hand which my friend, the midwife, and I joke 'starts labors'. I posted on Facebook about wanting to see some babies out and really thought about my midwife friend because she's now a few days past her due date and has for weeks, been eager to meet her babe. I figured I'd just help things along in my own way.
I woke up to not one, but two women in labor- and neither one of them was my friend! I went and witnessed the birth of two lovely human beings with shiny eyes and darling cries, and hugged their strong amazing parents while they celebrated the transition of their families with me.
So now this means that I can have the surgery sooner than mid-July. I'm relieved and scared about this information. Let's get this show on the road/Holycrap. I don't want surgery. But then, I don't want cancer either, and 'not wanting' didn't help me there, did it. So let's just get this crap done.
I loved being immersed so heavily into something else. The distraction that my work, whether it's co-op or births or house work, affords me is really priceless. I still found myself fighting this urge to say to the midwife attending the second birth, "I have cancer". A part of me wants to see how she'd react. A part of me wants to just inject it out there because it feels like a bubble inside of me, and maybe the pressure will release. A part of me still doesn't believe it and saying it still sounds so weird, like waking up one day and discovering that somehow, you can fluently speak another language.
I wrote last about feeling sort of invisible- and I did get some feedback and I appreciate that. I sat with it today and I what I want to say is that it's not that I think no one cares- it's that I'm vulnerable right now. I'm sensitive, and I'm soft, and vulnerable. This stupid cancer has exposed my soft little belly and every little bur pokes me in tender places. I give myself the grace and permission to just do what I need to do and say the things, even silly things, in retrospect, that I need to say in the moment.
Some days I want people to call me, email me, whatever. Some days I don't want to think about it. I don't expect anyone to be able to read my mind, and I hope that it's understandable that I am just a little crazy right now. When treading water, some time you keep your nose up, and sometimes you blow bubbles.
How am I feeling physically? My lymph nodes bother me (both sides of my neck pretty consistently now) and I just choose to believe that they're enlarged and cranky because they know there's an intruder. I do not want a biopsy. Randy says I'm dreading it as if I know it's giong to happen and frankly I think that's easier than hoping it won't happen, and being disappointed. I'd much rather be surprised the other way, if that makes sense.
Some days when I'm talking I can feel my voice sounding hoarse, and I clear my throat a lot. It's not every day, just some days. Today my lymph nodes feel enlarged like I'm getting a cold, only.. I don't have a cold. That achy pressury feeling that will now and for the rest of my life be a reminder that cancer is in me, was in me - because now it makes me worry that it has spread there, and this cancer does recur.
I don't even know what to say about that. I wonder if I were to get this same cancer again if I'd feel so ground into little bits about it, or if it would be more like, "Okay, whatever, been there, done that." I hope I never have to find out.
Sunday, June 10, 2012
How to talk to me
I was talking with a friend tonight about feeling invisible - it sounds so stupid and petty and I'm embarrassed even talking about it. It feels so selfish and petty and small of me, but this is what is on my mind. My friend checked in with me tonight (ahhh texting in the bath tub! lol) and it was a relief to say it to someone else who isn't married to me.
It just seems like there was this sudden rush of support, of people messaging me with their thoughts, fears, love, support- and suddenly I woke up one day and I couldn't even get a like on a status (see how stupid this is?) or a comment, or any evidence that anyone's even reading this blog besides my wonderful friend Molly. (Love you Molly.) No one calls, no emails- nothing. I feel like an ass even writing this.
I'm not unaware that grief and tragedy and these sorts of things freak people out- the first reaction is to rush in and offer support but then it's normal to back away and assume that someone is stepping in, showing care, showing up. But when everyone assumes that, no one (or very few people) are doing it. To go from a lush forest of support to a little desert is startling all on its own and it's hard not to feel like I'm being ridiculous- given that I'm not sick, that I don't feel bad for the most part, that I'm not getting some terrible chemo or whatever. I feel like the world shifted beneath my feet and I'm looking around to others to say, "Did you feel that?" and everyone is pretending like nothing happened.
This all goes back to me feeling like I haven't earned anyone's sympathies - and it all goes back to just wanting to be seen, heard, valued, loved, tended - something so human. A hole that I keep trying to fill, left open and wanting from when I was a kid and got none of those things. Going forward from the arm chair psychology, I just want what everyone else wants, and I feel guilty for it- just like most everyone else does.
So rather than waiting for it, I'll just put it out there. Here's how to talk to me now that the world cracked open.
Reach out. Call or email me. Check in if you want to. Don't do it just because you feel guilty. Just like everyone else, it's good to know that someone is thinking about me and sending love. If you don't like my cancer jokes, don't laugh- you don't have to. I can tell if you're laughing because you're uncomfortable and it just makes me feel self conscious.
If you have a better joke than mine, tell it! You aren't going to offend me by cracking jokes. Believe me- I could use the oxytocin right now! Tell me that you're sad, tell me you don't know what to say.
Just tell me the truth- don't avoid me because you're uncomfortable or you don't know what to say.
Please, don't tell me that it's "the best kind of cancer" unless you need to say it to make yourself feel better. It doesn't make ME feel better, unless you're saying it about you - "I'm so grateful that this is the best kind of cancer," is fine - not, "At least it's the best kind of cancer!" I feel totally silenced by minimization, not comforted. Statements about how I"ll just get over this fast and be fine - I know this, I do, AND right now it's a journey of surgeries, needles, radiation, time away from my family, worrying about the future- it's not 'simple' yet. When I look back, it will be - but I'm not there yet. Don't tell me how to feel, ASK me how I'm feeling. I will do my best to be honest with you.
If I say something random when we're together, just know I'm still not quite on this planet and I'm still trying to ascertain familiar landmarks.
I WANT to talk about it. Talk to me about it it you want to- I WILL want to talk about it.
At the end of the day, at the end of the blog posting, all I want is you to be AUTHENTIC in how you're feeling about it, what you think about it, what you are curious about- just be honest. It will never be the wrong thing.
I don't know if that is helpful or confusing, but I feel better just writing it, so at least there's that. Anything more is a bonus. :)
It just seems like there was this sudden rush of support, of people messaging me with their thoughts, fears, love, support- and suddenly I woke up one day and I couldn't even get a like on a status (see how stupid this is?) or a comment, or any evidence that anyone's even reading this blog besides my wonderful friend Molly. (Love you Molly.) No one calls, no emails- nothing. I feel like an ass even writing this.
I'm not unaware that grief and tragedy and these sorts of things freak people out- the first reaction is to rush in and offer support but then it's normal to back away and assume that someone is stepping in, showing care, showing up. But when everyone assumes that, no one (or very few people) are doing it. To go from a lush forest of support to a little desert is startling all on its own and it's hard not to feel like I'm being ridiculous- given that I'm not sick, that I don't feel bad for the most part, that I'm not getting some terrible chemo or whatever. I feel like the world shifted beneath my feet and I'm looking around to others to say, "Did you feel that?" and everyone is pretending like nothing happened.
This all goes back to me feeling like I haven't earned anyone's sympathies - and it all goes back to just wanting to be seen, heard, valued, loved, tended - something so human. A hole that I keep trying to fill, left open and wanting from when I was a kid and got none of those things. Going forward from the arm chair psychology, I just want what everyone else wants, and I feel guilty for it- just like most everyone else does.
So rather than waiting for it, I'll just put it out there. Here's how to talk to me now that the world cracked open.
Reach out. Call or email me. Check in if you want to. Don't do it just because you feel guilty. Just like everyone else, it's good to know that someone is thinking about me and sending love. If you don't like my cancer jokes, don't laugh- you don't have to. I can tell if you're laughing because you're uncomfortable and it just makes me feel self conscious.
If you have a better joke than mine, tell it! You aren't going to offend me by cracking jokes. Believe me- I could use the oxytocin right now! Tell me that you're sad, tell me you don't know what to say.
Just tell me the truth- don't avoid me because you're uncomfortable or you don't know what to say.
Please, don't tell me that it's "the best kind of cancer" unless you need to say it to make yourself feel better. It doesn't make ME feel better, unless you're saying it about you - "I'm so grateful that this is the best kind of cancer," is fine - not, "At least it's the best kind of cancer!" I feel totally silenced by minimization, not comforted. Statements about how I"ll just get over this fast and be fine - I know this, I do, AND right now it's a journey of surgeries, needles, radiation, time away from my family, worrying about the future- it's not 'simple' yet. When I look back, it will be - but I'm not there yet. Don't tell me how to feel, ASK me how I'm feeling. I will do my best to be honest with you.
If I say something random when we're together, just know I'm still not quite on this planet and I'm still trying to ascertain familiar landmarks.
I WANT to talk about it. Talk to me about it it you want to- I WILL want to talk about it.
At the end of the day, at the end of the blog posting, all I want is you to be AUTHENTIC in how you're feeling about it, what you think about it, what you are curious about- just be honest. It will never be the wrong thing.
I don't know if that is helpful or confusing, but I feel better just writing it, so at least there's that. Anything more is a bonus. :)
Henna and processing
Well I'm to the point now where my days are filled up with thoughts of normal life, interrupted intermittently with, "Oh, shit, I have cancer!" which never fails to surprise me. Every single time I think it, I'm surprised by the contents of that thought.
I am eager to get to the place where I feel serene and not so... impatient, put out, interrupted, angry about the inconvenience and the procedures, sad, awkward, invisible.
I fight this discomfort because I don't like it but I know it's perfectly where I need to be right now- part of the process of healing isn't just physical, I need to let myself get there emotionally and spiritually too.
On June 15th (if dates work out) I'll get to have MY OWN henna appointment- henna for me! I'm getting henna over my neck and upper chest (décolleté area). It feels like armor. I can't wait. :)
I am eager to get to the place where I feel serene and not so... impatient, put out, interrupted, angry about the inconvenience and the procedures, sad, awkward, invisible.
I fight this discomfort because I don't like it but I know it's perfectly where I need to be right now- part of the process of healing isn't just physical, I need to let myself get there emotionally and spiritually too.
On June 15th (if dates work out) I'll get to have MY OWN henna appointment- henna for me! I'm getting henna over my neck and upper chest (décolleté area). It feels like armor. I can't wait. :)
Friday, June 8, 2012
Ripples & How I found out about this whole thing
When I'm sitting down to write, I see what I want to say in imagery, oftentimes. The image I see when I think about my journey with cancer is of a water dropping into a pool and the resulting ripples. Here's a handy map of where I think I am, currently.
The way I see this processing thing visually is like this. The most energy is spent just absorbing the impact of the asteroid of the bad news that you get. Then there is this deep withdrawal of energy as you go inside (yourself, your family unit, your community, whatever) to sort out what the hell this new force means.
Time passes, the energy dissipates but in the mean time, there are ups and downs- good days, bad days.
Obviously it's more complex than this but this is the visual that's working for me right now. I feel like I'm on the upward slope of the deep concussion that this has created in my field. I am going to have dark days and thankfully, I'll have a lot more light ones.
I keep thinking about the post I wrote yesterday about how I'm taking care of myself. I'm glad I wrote it, it holds me accountable - and on the other side, I feel just a little embarrassed because I do know better, I know how silly it is - and I can just keep choosing better at every opportunity and not feeling guilty when I choose to indulge. I can choose not to eat anger and bitterness.
So one of the questions that I keep getting is "How did you find know something was wrong?"
Every time I am asked this question, I hear the deeper question of, "Have I experienced what she did? Should I be worried?" They compare what I tell them with what they have personally experienced and when it doesn't line up, there is a sense of relief.
So here's the poop.
I have been pretty good about getting physicals every few years all of my adult life. I have health insurance, I might as well use it, I figure. At every physical I can remember, I've been told I have an enlarged thyroid gland. We'd do blood tests to make sure my blood thyroid levels were where they should be (they always were) and then we never worried further about it.
.jpg)
I had a physical in January of this year and again we did the tests and all was fine. In February, I noticed that I could feel something just pressing at the base of my esophagus (gently press your finger against your throat, not enough to cause you pain or discomfort but just enough that you feel it on your windpipe - that's what I felt). I knew it was probably my thyroid and I didn't think a lot about it, I just made an appointment and expected to have an ultrasound and be done with it.
February 17th I had the ultrasound and while I didn't get to see the ultrasound (your head is tipped back so your throat is well exposed), I did catch the last snapshot which was this.
So if you're looking at it, the round thing in the center is my windpipe. The tumor is on the left side of the imaging but it's actually on MY right side.
The report on the 'cyst' at the time said:
There is a hypoechoic mass medially in the mid right lobe at the junction with the isthmus it demonstrates increased through transmission compatible with as colloid cyst. And measures 1.3 x 0.6 x 1.1 cm in size.
There is no other thyroid nodule.
I started having to think about whether I had cancer. I got really scared and had intense writings and processing and went into the inner world of trying on, "What if I have terminal cancer?" What would it mean, how would I tell my kids?
It was so good for me to do that because after a few days of that, I moved forward knowing that I would just do what needed to be done, no matter what the answers were. I set those fears aside, and focused on the biopsy.
Here is the actual result:
THYROID, RIGHT LOBE, FINE NEEDLE ASPIRATION: MALIGNANT; CONSISTENT WITH PAPILLARY THYROID CARCINOMA
And that should bring you up to speed to the blog.
The way I see this processing thing visually is like this. The most energy is spent just absorbing the impact of the asteroid of the bad news that you get. Then there is this deep withdrawal of energy as you go inside (yourself, your family unit, your community, whatever) to sort out what the hell this new force means.
Time passes, the energy dissipates but in the mean time, there are ups and downs- good days, bad days.
Obviously it's more complex than this but this is the visual that's working for me right now. I feel like I'm on the upward slope of the deep concussion that this has created in my field. I am going to have dark days and thankfully, I'll have a lot more light ones.
I keep thinking about the post I wrote yesterday about how I'm taking care of myself. I'm glad I wrote it, it holds me accountable - and on the other side, I feel just a little embarrassed because I do know better, I know how silly it is - and I can just keep choosing better at every opportunity and not feeling guilty when I choose to indulge. I can choose not to eat anger and bitterness.
So one of the questions that I keep getting is "How did you find know something was wrong?"
Every time I am asked this question, I hear the deeper question of, "Have I experienced what she did? Should I be worried?" They compare what I tell them with what they have personally experienced and when it doesn't line up, there is a sense of relief.
So here's the poop.
I have been pretty good about getting physicals every few years all of my adult life. I have health insurance, I might as well use it, I figure. At every physical I can remember, I've been told I have an enlarged thyroid gland. We'd do blood tests to make sure my blood thyroid levels were where they should be (they always were) and then we never worried further about it.
.jpg)
I had a physical in January of this year and again we did the tests and all was fine. In February, I noticed that I could feel something just pressing at the base of my esophagus (gently press your finger against your throat, not enough to cause you pain or discomfort but just enough that you feel it on your windpipe - that's what I felt). I knew it was probably my thyroid and I didn't think a lot about it, I just made an appointment and expected to have an ultrasound and be done with it.
February 17th I had the ultrasound and while I didn't get to see the ultrasound (your head is tipped back so your throat is well exposed), I did catch the last snapshot which was this.
So if you're looking at it, the round thing in the center is my windpipe. The tumor is on the left side of the imaging but it's actually on MY right side.
The report on the 'cyst' at the time said:
There is a hypoechoic mass medially in the mid right lobe at the junction with the isthmus it demonstrates increased through transmission compatible with as colloid cyst. And measures 1.3 x 0.6 x 1.1 cm in size.
There is no other thyroid nodule.
Basically what it says is that it there's a mass that looks like a colloid cyst and no other visible nodules. So, yay! It's probably a cyst, a normal thing that happens to thyroids everywhere and I don't have to worry too much... but we should do a fine needle aspiration biopsy to be sure (FNA). Aw hell.
Somewhere in the midst of all this, I developed an infection in a lymph node up under my right jaw. I had never heard of lymph nodes getting infected (I know they help with infections, but I didn't realize they GOT infected) so of course I google it and find out that it can be a response to cancer being nearby. This worried me a little but I think I did a good job of staying grounded and not freaking out too much at this time. The infection was cleared up with antibiotics but the node continued to bother me, feeling like it was getting pulled or just generally uncomfortable. Not tender to the touch, but like something was awry.
It was so good for me to do that because after a few days of that, I moved forward knowing that I would just do what needed to be done, no matter what the answers were. I set those fears aside, and focused on the biopsy.
I was pretty scared of the biopsy because I'd read that it was very painful and painful for days afterward. Getting the biopsy was relatively quick and easy, and uncomfortable but not terribly painful and afterward was pretty much fine, too. The people who took care of me were stellar so we got the info and then we waited for the result. I was not worried about the results, I just wanted to get them so I could go on with my life.
Three days later, my results said:
Sparsely cellular aspirate comprised of follicular cells with architectural atypia. Colloid is scant to absent. A repeat aspirate after
an appropriate interval of observation may be helpful if clinically indicated.
an appropriate interval of observation may be helpful if clinically indicated.
This basically says that it's not benign, but not malignant - it's a status of result that can become malignant in 5-15% of the time. There were no colloid cells so we couldn't call it a nice benign colloid cyst anymore- now it was something just a little more nefarious. Not cancer, but.. not NOT cancer, either. The next thing to do was to just wait three months and have a repeat and hopefully there would be no change. If there was no change, I'd probably have another FNA six months later (it felt like we were waiting for cancer to show up).
In the meantime my lymph node was bothering me a lot and even waking me up out of a dead sleep sometimes, so I emailed my doctor to let her know. She decided to bump up the biopsy so I went in on May 18. The biopsy sucked but I had decided that unless it was cancer, I would just keep having biopsies until I needed something else, because I didn't want to have a surgery just to avoid the biopsies.
Then on Wednesday May 23rd I called to get my results. Previously I'd never had any trouble getting results over the phone. This time, the nurse said, "I will have to have a doctor call you back."
Here is the actual result:
THYROID, RIGHT LOBE, FINE NEEDLE ASPIRATION: MALIGNANT; CONSISTENT WITH PAPILLARY THYROID CARCINOMA
And that should bring you up to speed to the blog.
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