Tomorrow I will have the phone appointment with my endocrinologist. She will explain my labs and in concert with my ultrasound I expect to hear that I am still clear of thyroid cancer. :)
After we have that phone conversation I will have to figure out what to do about the other symptoms I have and who I'm going to see about it. I wish that my care wasn't fragmented, and that physicians in the same HMO would just talk to each other and see if we could get a full picture of what's up. Maybe it's something small, I no longer feel all whipped up that it's something awful- but I don't feel resolved that it isn't, either, so I have to just see what is in the realm of possibilities.
It's nice to not have my days filled up with worries and cycling thoughts. If nothing else, the ultrasound was a milestone I could reach and pass and even if the information I gained didn't give me much to work with, it was enough to calm my mind. That's enough.
Sunday, October 6, 2013
Friday, October 4, 2013
After appointment
So here's the news you came here for - after the ultrasound, the radiologist did not feel that a biopsy was needed. Basically I have a few enlarged lymph nodes but not significantly enlarged enough to be of concern, so I walked out with no bandaids and a lot of confusion.
It's good news- we're basically ruling out thyroid cancer all together. I remain in remission, 16 months. Woot! Still, I stood there feeling very conflicted and confused. I have spent all afternoon reflecting on this and I realize that the lack of biopsy means no thyroid cancer, but doesn't rule out anything else really. Which is okay too, I think... I'm not sure. I'm sitting with it.
It makes me feel like maybe I'm just making mountains out of molehills, it makes me feel bad for worrying people before knowing for sure there was something truly to worry about, and it leaves me confused about where to go from here.
I did get a response back after my strongly worded email to my doctor- from her LPN, who suggests that I call to make a phone appointment with my doctor to discuss my concerns. I have to admit, after the message I sent, I kind of expected a little more than that and I'm pretty angry to be left flapping in the wind with worries and pushed through the system like a number. Am I wrong to think that a little personal involvement, especially after my concise statement of concerns, would be appropriate? I don't think so.
I woke up this morning thinking that I should just switch to a doctor who has a little more sensitivity. Dr. B really has great qualities and for the day-to-day stuff I've been pretty happy with her care. She's not the best doctor I've ever had but come on, no one's perfect. However, the struggles I've had now, twice, in dealing with her or her office, is really over the top and over the line for me- so I think I will move on to another family practice doc and try my luck elsewhere.
What I wanted at some point, in retrospect, was for one of these providers to say, "Here are some of the things that could cause the symptoms you're having." I didn't get that, not even a guess. No one even said, "Do you have cold symptoms?" My enlarged, achy lymph nodes were a concern to everyone until the night before my ultrasound when suddenly they became unremarkable.
This is the kind of emotional roller coaster no one needs. So now I wonder, and worry that I'm wondering too much, if we're missing something. I want to sit down, paint the whole picture for someone who is willing to think through what might be going on, and run the tests necessary. I want to talk to someone who is okay talking with other people on my care team to get a bigger picture. I want to talk to someone who understands the significance to dropping words like lymphoma casually in an office visit to a patient who has symptoms of it, and who doesn't fall back to medical lingo when questioned. I feel like those are baseline things to look for.
So that's where I'm at. I'm happy it was not lit up for cancer, very happy. At the same time, I still don't know where to go with this, and I'm not sure if I should just let it go, see how I feel in three months and come at it again, or if something is going on where that would be some serious lost time and be impactful. I don't know! I just don't know.
For now I have a follow up appointment with my endocrinologist on Monday where we'll talk through my labs and ultrasound. She'll surely tell me that I'm clear of cancer and that maybe my meds need adjusting or something. I guess after that, I find another family practice doc and lay it all out to her and see what happens from there. Yay! and... ???!
In the meantime, I feel somewhat relieved, I got to the milestone. I got to the ultrasound and even though I was so scared I thought I was going to faint while walking down that hallway, here I am, with a little more info, a little more piece of mind. It's a good day.
It's good news- we're basically ruling out thyroid cancer all together. I remain in remission, 16 months. Woot! Still, I stood there feeling very conflicted and confused. I have spent all afternoon reflecting on this and I realize that the lack of biopsy means no thyroid cancer, but doesn't rule out anything else really. Which is okay too, I think... I'm not sure. I'm sitting with it.
It makes me feel like maybe I'm just making mountains out of molehills, it makes me feel bad for worrying people before knowing for sure there was something truly to worry about, and it leaves me confused about where to go from here.
I did get a response back after my strongly worded email to my doctor- from her LPN, who suggests that I call to make a phone appointment with my doctor to discuss my concerns. I have to admit, after the message I sent, I kind of expected a little more than that and I'm pretty angry to be left flapping in the wind with worries and pushed through the system like a number. Am I wrong to think that a little personal involvement, especially after my concise statement of concerns, would be appropriate? I don't think so.
I woke up this morning thinking that I should just switch to a doctor who has a little more sensitivity. Dr. B really has great qualities and for the day-to-day stuff I've been pretty happy with her care. She's not the best doctor I've ever had but come on, no one's perfect. However, the struggles I've had now, twice, in dealing with her or her office, is really over the top and over the line for me- so I think I will move on to another family practice doc and try my luck elsewhere.
What I wanted at some point, in retrospect, was for one of these providers to say, "Here are some of the things that could cause the symptoms you're having." I didn't get that, not even a guess. No one even said, "Do you have cold symptoms?" My enlarged, achy lymph nodes were a concern to everyone until the night before my ultrasound when suddenly they became unremarkable.
This is the kind of emotional roller coaster no one needs. So now I wonder, and worry that I'm wondering too much, if we're missing something. I want to sit down, paint the whole picture for someone who is willing to think through what might be going on, and run the tests necessary. I want to talk to someone who is okay talking with other people on my care team to get a bigger picture. I want to talk to someone who understands the significance to dropping words like lymphoma casually in an office visit to a patient who has symptoms of it, and who doesn't fall back to medical lingo when questioned. I feel like those are baseline things to look for.
So that's where I'm at. I'm happy it was not lit up for cancer, very happy. At the same time, I still don't know where to go with this, and I'm not sure if I should just let it go, see how I feel in three months and come at it again, or if something is going on where that would be some serious lost time and be impactful. I don't know! I just don't know.
For now I have a follow up appointment with my endocrinologist on Monday where we'll talk through my labs and ultrasound. She'll surely tell me that I'm clear of cancer and that maybe my meds need adjusting or something. I guess after that, I find another family practice doc and lay it all out to her and see what happens from there. Yay! and... ???!
In the meantime, I feel somewhat relieved, I got to the milestone. I got to the ultrasound and even though I was so scared I thought I was going to faint while walking down that hallway, here I am, with a little more info, a little more piece of mind. It's a good day.
B Day
It's biopsy day! Some new developments have occurred leaving me with mixed feelings about today, and what will happen from here on out, but I'm pretty much going to be the mistress of my own care and not let this get me too upset for too long. Had a great crying jag and lots of rage last night.
I've covered the story enough times that I'll give you bullet points to bring you back up to speed.
- Endo heard symptoms that weren't in her area and said I should see someone else.
- Made appointment with family practice doc who found several enlarged lymph nodes (not huge, but enlarged) in my neck and face. She asked me about the ultrasound and whether it would be a biopsy, and that we should talk afterward because some lymphomas can cause the symptoms I'm having.
- I asked the endo to change the ultrasound to a 'biopsy if needed' based on those comments and just realizing that if there's something to see, let's just get the information ASAP and not drag this out any longer than we have to.
I emailed my FP doc and told her that I"d made this change and asked her to get in touch with my endo or radiology or whomever she needs to in order to make sure that the biopsy is looking for anything she thinks we might find (i.e., the lymphoma you mentioned, thank you!)
She didn't reply to me for five days, at which time I wrote a second email, feeling nervous now (getting her on the phone is impossible because of the way this system is set up) that I haven't heard from her, so the LPN responds to acknowledge my email and that my doc will reply asap.
Here is the message I sent her:
Hi Dr. B,
I have asked Dr. (the endocrinologist) to update my order for the neck ultrasound to go from surveillance to a biopsy if needed. I want to make sure that if there's something you want them looking for in a biopsy that you have a chance in advance to get that communicated through whatever channels are necessary.
The ultrasound is scheduled for 10/4 at {}. I am not interested in having two biopsies so if you think there's good information to be gleaned, please do communicate with her about the order, or however that needs to happen. Thank you! I'll talk with you after the ultrasound.
After now, a week of no response, increasing anxiety about this biopsy, and of course all of the 'what if' scenarios that play out for someone who is on this side of a major test, I get this response from her last night:
Hi Kristina,
You just had mildly enlarged lymph nodes and mild fullness in the area of your thyroidectomy, I did not feel any dominant masses that needed attention. Your labs were unremarkable.
Dr. B, MD
I was totally livid and didn't know why at first. I went back and read it a few times and I realized that all of the concern and intensity that she showed in our face to face, was complete lacking in this email. "Just" have mildly enlarged lymph nodes- Dude, you dropped the word LYMPHOMA on me. You asked me about BIOPSY and said you wanted a phone visit with me after that happens so we can do further tests, like chest x-rays. WTF!! "Just"?!
I lost my shit last night. I really did. I fell apart driving my son home from his girlfriend's house when he asked me what was wrong. He put his arm around me and I just started crying because when did he grow up enough to comfort me like that?? And goddamnit this SUCKS and I don't want it to suck in front of my kids, but I'm almost having to pull over because I'm crying so hard and he's just got his arm around me, letting me work it out. We get to the house and get out of the car and he grabs me and hugs me (he's giant) and tells me how great a mom I am, and how proud he is that I'm his mom, and how strong I am and how much he values that. I am just kind of shell shocked in many ways. LOL It's such a beautiful moment and I'm mad that it takes THIS to bring it forward.
I cried some more and just had to sort through it- suddenly I felt abandoned by my doc, that she is dismissing what is happening for me and doesn't have a CLUE what the use of her language means for her patients. I wrote many drafts and finally set her this reply:
This is very unhelpful to me, the (very stressful) night before my ultrasound/biopsy. Your response below leaves me to believe you are unconcerned about the 'mild' symptoms I described to you at my visit, and on the night before my ultrasound/biopsy this is a stress I absolutely do NOT need.
Please help me by telling me the next steps you foresee now that you have my blood work back. You asked me in my appointment if I was having a biopsy more than once, which led me to believe you felt this was important. Your message below leaves me wondering if I misunderstood. I am feeling very lost in what is happening now, that I lack your support and clarity on what we are looking for and how we're looking for it. Something is wrong. We need to figure it out. I need to know what we are looking for and how we are doing that.
Please also know that saying words like 'lymphoma' in a visit, asking about a biopsy and then following up with language like "just had mildly enlarged lymph nodes" sends very conflicting messages to a patient, and causes tremendous stress and worry. Are we looking to rule out lymphoma or not? Will the biopsy address this or not? What is the next step you and I are taking together on this issue?
At this time, I just needed a PLAN. What are we DOING?? So I made the decision. I am having a biopsy. I will talk with them today and make sure that if there is some kind of other cancer issue, that they will be able to find it because they are looking for it. I will have one more face to face with this doc and if she doesn't absolutely 100% get on board with me, I will find someone else. Which sucks, because in the day-to-day, she's a decent match for me. But when it comes to this stuff I don't think we're a good team.
So I got absolutely shit sleep last night, my brain was spinning out of control until 2am but I woke up in a good mood. I feel relatively relaxed right now. I'm just doing one thing at a time and not thinking too far ahead. I'm sleepy but I can nap later, so right now it's get the girl off to the bus, go have breakfast with my husband, and then head to the ferry. Just one thing at a time. I feel like Chandler at his wedding to Monica. ;)
I'm going to bring a little piece of a cedar tree with me to hold, and headphones so I can try to listen to music too, so hopefully just tune out and get through it. Randy is the perfect doula for me- he knows what to do, what to say, and he's very tuned in to me so it's never bumpy. There is a lot of touching and not a lot of platitudes which is great because I've kind of heard/said it all in my line of work and I really don't want to hear it used on me. ;) lol
Once I know more about timelines, when results come back, etc., I'll update.
Thanks for holding me in your heart today. xoxo
I've covered the story enough times that I'll give you bullet points to bring you back up to speed.
- Endo heard symptoms that weren't in her area and said I should see someone else.
- Made appointment with family practice doc who found several enlarged lymph nodes (not huge, but enlarged) in my neck and face. She asked me about the ultrasound and whether it would be a biopsy, and that we should talk afterward because some lymphomas can cause the symptoms I'm having.
- I asked the endo to change the ultrasound to a 'biopsy if needed' based on those comments and just realizing that if there's something to see, let's just get the information ASAP and not drag this out any longer than we have to.
I emailed my FP doc and told her that I"d made this change and asked her to get in touch with my endo or radiology or whomever she needs to in order to make sure that the biopsy is looking for anything she thinks we might find (i.e., the lymphoma you mentioned, thank you!)
She didn't reply to me for five days, at which time I wrote a second email, feeling nervous now (getting her on the phone is impossible because of the way this system is set up) that I haven't heard from her, so the LPN responds to acknowledge my email and that my doc will reply asap.
Here is the message I sent her:
Hi Dr. B,
I have asked Dr. (the endocrinologist) to update my order for the neck ultrasound to go from surveillance to a biopsy if needed. I want to make sure that if there's something you want them looking for in a biopsy that you have a chance in advance to get that communicated through whatever channels are necessary.
The ultrasound is scheduled for 10/4 at {}. I am not interested in having two biopsies so if you think there's good information to be gleaned, please do communicate with her about the order, or however that needs to happen. Thank you! I'll talk with you after the ultrasound.
After now, a week of no response, increasing anxiety about this biopsy, and of course all of the 'what if' scenarios that play out for someone who is on this side of a major test, I get this response from her last night:
Hi Kristina,
You just had mildly enlarged lymph nodes and mild fullness in the area of your thyroidectomy, I did not feel any dominant masses that needed attention. Your labs were unremarkable.
Dr. B, MD
I was totally livid and didn't know why at first. I went back and read it a few times and I realized that all of the concern and intensity that she showed in our face to face, was complete lacking in this email. "Just" have mildly enlarged lymph nodes- Dude, you dropped the word LYMPHOMA on me. You asked me about BIOPSY and said you wanted a phone visit with me after that happens so we can do further tests, like chest x-rays. WTF!! "Just"?!
I lost my shit last night. I really did. I fell apart driving my son home from his girlfriend's house when he asked me what was wrong. He put his arm around me and I just started crying because when did he grow up enough to comfort me like that?? And goddamnit this SUCKS and I don't want it to suck in front of my kids, but I'm almost having to pull over because I'm crying so hard and he's just got his arm around me, letting me work it out. We get to the house and get out of the car and he grabs me and hugs me (he's giant) and tells me how great a mom I am, and how proud he is that I'm his mom, and how strong I am and how much he values that. I am just kind of shell shocked in many ways. LOL It's such a beautiful moment and I'm mad that it takes THIS to bring it forward.
I cried some more and just had to sort through it- suddenly I felt abandoned by my doc, that she is dismissing what is happening for me and doesn't have a CLUE what the use of her language means for her patients. I wrote many drafts and finally set her this reply:
This is very unhelpful to me, the (very stressful) night before my ultrasound/biopsy. Your response below leaves me to believe you are unconcerned about the 'mild' symptoms I described to you at my visit, and on the night before my ultrasound/biopsy this is a stress I absolutely do NOT need.
Please help me by telling me the next steps you foresee now that you have my blood work back. You asked me in my appointment if I was having a biopsy more than once, which led me to believe you felt this was important. Your message below leaves me wondering if I misunderstood. I am feeling very lost in what is happening now, that I lack your support and clarity on what we are looking for and how we're looking for it. Something is wrong. We need to figure it out. I need to know what we are looking for and how we are doing that.
Please also know that saying words like 'lymphoma' in a visit, asking about a biopsy and then following up with language like "just had mildly enlarged lymph nodes" sends very conflicting messages to a patient, and causes tremendous stress and worry. Are we looking to rule out lymphoma or not? Will the biopsy address this or not? What is the next step you and I are taking together on this issue?
At this time, I just needed a PLAN. What are we DOING?? So I made the decision. I am having a biopsy. I will talk with them today and make sure that if there is some kind of other cancer issue, that they will be able to find it because they are looking for it. I will have one more face to face with this doc and if she doesn't absolutely 100% get on board with me, I will find someone else. Which sucks, because in the day-to-day, she's a decent match for me. But when it comes to this stuff I don't think we're a good team.
So I got absolutely shit sleep last night, my brain was spinning out of control until 2am but I woke up in a good mood. I feel relatively relaxed right now. I'm just doing one thing at a time and not thinking too far ahead. I'm sleepy but I can nap later, so right now it's get the girl off to the bus, go have breakfast with my husband, and then head to the ferry. Just one thing at a time. I feel like Chandler at his wedding to Monica. ;)
I'm going to bring a little piece of a cedar tree with me to hold, and headphones so I can try to listen to music too, so hopefully just tune out and get through it. Randy is the perfect doula for me- he knows what to do, what to say, and he's very tuned in to me so it's never bumpy. There is a lot of touching and not a lot of platitudes which is great because I've kind of heard/said it all in my line of work and I really don't want to hear it used on me. ;) lol
Once I know more about timelines, when results come back, etc., I'll update.
Thanks for holding me in your heart today. xoxo
Tuesday, October 1, 2013
Floating on
It's a weird day. I'm sort of counting down the days in my mind before Friday. I'm running through possible scenarios which helps me feel better until I hit a place where it's all bad, awful news, and then I rewind and start a new one.
I am watching Orange is the New Black and there are several scenes where Piper, the main character, is floating up and out of her body and something shifts inside her as she realizes what she's coping with. Her eyes are wide and her mouth sort of hangs open and her hands are limp at her sides and she walks along in a daze. (Maybe this is why I'm reading zombie stories again...) I totally feel this sort of shock and wonder and curiosity, and fortunately the gaps of that are large between the terrible fear of what is to come.
There are times when I see 'signs' that things will be okay. When I drove past that car that said Cancer Free Mom and Wife, that felt like a message. I mean, how random was that? I was reading an article completely unrelated to anything health related and she mentions delaying getting into a relationship because she was undergoing testing for cancer- and that after she found out she did not in fact have cancer, dived in. I thought, (how can you help yourself), maybe these are signs?
It reminds me of that joke:
There is a flood and some people are trapped on a rooftop. Some people go by in a boat and offer help and the family says, "Oh no, God will save us! We'll wait here." Other people come by to help in a helicopter, and it is the same response. "God will come for us and rescue us, but thank you anyway!"
The family dies, and when they get to heaven they ask God why he didn't help them. God replies, "I sent a boat and a helicopter, what more should I have done?"
It's a great joke and definitely has solid truth to it. Am I helping myself? Am I missing a helicopter? I'm letting those messages be the boats that I need to feel hopeful that maybe I am okay and that something easily fixed is causing all this ruckus. Or that, if I had to have some cancer, that maybe it is more easily treated with a good prognosis.
It's hard to sit here and have life be normal and at the same time if it's not, what else am I supposed to do? It's not like last time where everything felt so weird, out of place. I felt differently, and today I was wondering about that and realized that SO much has happened since early 2012 when I started this whole journey (cancer treatment, going to Uganda, my mother dying of an overdose), that I am changed, I am different, and my response will be different as a result.
I appreciate that I can always marvel at myself. :) Chalk one up for the easily amused!
In the meantime I'm trying not to be cranky. I'm tired all the time really, I go to bed so early now and wake up tired, tired all day- nap, still tired. I don't know if that's an emotional response but whatever, I'm working with it. I'm making some changes to my work load and just enjoying the periods of time when I can just be home, alone. It's quiet. No one is asking anything of me, that time is so precious.
My birthday is coming up in a couple of weeks. How weird is that? This time last year I was in Uganda. I miss it. The first anniversary of my mother's meaningless death is coming up in 12 days. Fall has become a weird season for me.
On we float... riding the waves that crest underneath us and hope to not topple over. So far, I'm hanging on.
I am watching Orange is the New Black and there are several scenes where Piper, the main character, is floating up and out of her body and something shifts inside her as she realizes what she's coping with. Her eyes are wide and her mouth sort of hangs open and her hands are limp at her sides and she walks along in a daze. (Maybe this is why I'm reading zombie stories again...) I totally feel this sort of shock and wonder and curiosity, and fortunately the gaps of that are large between the terrible fear of what is to come.
There are times when I see 'signs' that things will be okay. When I drove past that car that said Cancer Free Mom and Wife, that felt like a message. I mean, how random was that? I was reading an article completely unrelated to anything health related and she mentions delaying getting into a relationship because she was undergoing testing for cancer- and that after she found out she did not in fact have cancer, dived in. I thought, (how can you help yourself), maybe these are signs?
It reminds me of that joke:
There is a flood and some people are trapped on a rooftop. Some people go by in a boat and offer help and the family says, "Oh no, God will save us! We'll wait here." Other people come by to help in a helicopter, and it is the same response. "God will come for us and rescue us, but thank you anyway!"
The family dies, and when they get to heaven they ask God why he didn't help them. God replies, "I sent a boat and a helicopter, what more should I have done?"
It's a great joke and definitely has solid truth to it. Am I helping myself? Am I missing a helicopter? I'm letting those messages be the boats that I need to feel hopeful that maybe I am okay and that something easily fixed is causing all this ruckus. Or that, if I had to have some cancer, that maybe it is more easily treated with a good prognosis.
It's hard to sit here and have life be normal and at the same time if it's not, what else am I supposed to do? It's not like last time where everything felt so weird, out of place. I felt differently, and today I was wondering about that and realized that SO much has happened since early 2012 when I started this whole journey (cancer treatment, going to Uganda, my mother dying of an overdose), that I am changed, I am different, and my response will be different as a result.
I appreciate that I can always marvel at myself. :) Chalk one up for the easily amused!
In the meantime I'm trying not to be cranky. I'm tired all the time really, I go to bed so early now and wake up tired, tired all day- nap, still tired. I don't know if that's an emotional response but whatever, I'm working with it. I'm making some changes to my work load and just enjoying the periods of time when I can just be home, alone. It's quiet. No one is asking anything of me, that time is so precious.
My birthday is coming up in a couple of weeks. How weird is that? This time last year I was in Uganda. I miss it. The first anniversary of my mother's meaningless death is coming up in 12 days. Fall has become a weird season for me.
On we float... riding the waves that crest underneath us and hope to not topple over. So far, I'm hanging on.
Monday, September 30, 2013
Somehow, posting to Facebook and letting everyone know this is happening somehow makes it more real. I am really looking to see if I have cancer again, and possibly a different type. That is happening, for real, right now. To me.
I can't believe it's actually happening. I am living it every day, but suddenly it feels... surreal. I can't believe it's happening.
In preparation for the biopsy I can't have any Tylenol, Naproxen or Ibuprofen. It sucks because my neck is aching and I'd love to take a little something. Randy pointed out it probably feels like this because I know I can't have anything. I'm sure he's right. Still.
I can't believe it's actually happening. I am living it every day, but suddenly it feels... surreal. I can't believe it's happening.
In preparation for the biopsy I can't have any Tylenol, Naproxen or Ibuprofen. It sucks because my neck is aching and I'd love to take a little something. Randy pointed out it probably feels like this because I know I can't have anything. I'm sure he's right. Still.
Thursday, September 26, 2013
Little break
I think I might take a little break from writing, a conscious decision. Thinking about all of this is causing me to feel really scared and anxious and honestly, I just can't stand feeling that way.
Here are the changes to date:
I'm starting to be pretty convinced after all these blood tests and whatnot that maybe thyroid cancer isn't my problem, and this other L word is. Oof. I just said it. Kind of lead-balloon feeling right now.
Signs of lymphoma are night chills and sweats, enlarged lymph nodes in the head and neck, rubbery/firm enlarged lymph nodes, fatigue, and some other things. They're sort of amorphous enough to be attributed to many things. This word keeps popping up though, and I know that Dr. B. is thinking in that direction as we proceed with testing. So it's on the table, in a way. No, not in a way. It's on the table.
I have an ultrasound scheduled on the 4th and I was sitting in the bath tub last night thinking how dumb it is that I would miss the opportunity to have a biopsy. I'll be in Seattle at the one place where this ultrasound is done, and if I don't have a biopsy at that time, I'll just have to come back later to do it. I summoned my courage and emailed my endocrinologist (Dr. K) and asked her to please make sure that the biopsy is ordered. She replied supportively and said that she changed the order and that if they felt at the time it was needed, we'd go for it. This causes me to feel relieved and doubly scared. If someone says, "We need to do a biopsy", that means something's wrong. I'm going to be a wreck next Friday.
On October 7th I'll speak by phone with my endo and we'll discuss my ultrasound and my blood test results and get everything put into context. I'm asking Dr. B. to correspond with Dr. K. so that we're not doubling efforts for no reason, and we're not missing anything that falls in between both their care of me.
I'm shaking just writing this post. I woke up this morning at 5am and couldn't get back to sleep for two hours, because once my brain remembers that this is all happening, I get scared. I spend a lot of time just breathing, wiggling my toes and remembering that waiting is the hard part, and that I can just stay busy until next Friday. It seems an eternity away.
After the ultrasound I have the phone consult with my endo, and will set one up with Dr. B. We will at that time set up the x-rays of my abdomen I'm assuming to check for organ enlargement that generally comes with lymphoma. Fuckballs. So... yeah. This is my world right now. Doing my best to just keep distracted because when I'm not thinking about all of this, I'm actually pretty damned happy. Things are going really well right now and I'm set on enjoying it. But sometimes.. it's just all too much.
So maybe I'll not write for a bit, and give myself a break. I don't know. I canceled my therapy appointment for financial reasons, but I'm also dreading seeing her and potentially talking about this because in some way it will make it land and become real. I'm keeping the terror at bay so far, I'm just scared, and that is bad enough.
Here are the changes to date:
I'm starting to be pretty convinced after all these blood tests and whatnot that maybe thyroid cancer isn't my problem, and this other L word is. Oof. I just said it. Kind of lead-balloon feeling right now.
Signs of lymphoma are night chills and sweats, enlarged lymph nodes in the head and neck, rubbery/firm enlarged lymph nodes, fatigue, and some other things. They're sort of amorphous enough to be attributed to many things. This word keeps popping up though, and I know that Dr. B. is thinking in that direction as we proceed with testing. So it's on the table, in a way. No, not in a way. It's on the table.
I have an ultrasound scheduled on the 4th and I was sitting in the bath tub last night thinking how dumb it is that I would miss the opportunity to have a biopsy. I'll be in Seattle at the one place where this ultrasound is done, and if I don't have a biopsy at that time, I'll just have to come back later to do it. I summoned my courage and emailed my endocrinologist (Dr. K) and asked her to please make sure that the biopsy is ordered. She replied supportively and said that she changed the order and that if they felt at the time it was needed, we'd go for it. This causes me to feel relieved and doubly scared. If someone says, "We need to do a biopsy", that means something's wrong. I'm going to be a wreck next Friday.
On October 7th I'll speak by phone with my endo and we'll discuss my ultrasound and my blood test results and get everything put into context. I'm asking Dr. B. to correspond with Dr. K. so that we're not doubling efforts for no reason, and we're not missing anything that falls in between both their care of me.
I'm shaking just writing this post. I woke up this morning at 5am and couldn't get back to sleep for two hours, because once my brain remembers that this is all happening, I get scared. I spend a lot of time just breathing, wiggling my toes and remembering that waiting is the hard part, and that I can just stay busy until next Friday. It seems an eternity away.
After the ultrasound I have the phone consult with my endo, and will set one up with Dr. B. We will at that time set up the x-rays of my abdomen I'm assuming to check for organ enlargement that generally comes with lymphoma. Fuckballs. So... yeah. This is my world right now. Doing my best to just keep distracted because when I'm not thinking about all of this, I'm actually pretty damned happy. Things are going really well right now and I'm set on enjoying it. But sometimes.. it's just all too much.
So maybe I'll not write for a bit, and give myself a break. I don't know. I canceled my therapy appointment for financial reasons, but I'm also dreading seeing her and potentially talking about this because in some way it will make it land and become real. I'm keeping the terror at bay so far, I'm just scared, and that is bad enough.
Wednesday, September 25, 2013
Biopsy land
Not sure I mentioned that when I met with Dr. B, she wants me to have a biopsy done. I think I kind of skipped over that information in my mind yesterday, and then I was at a birth all night last night so too engrossed to think about it. Shit. I mean, I knew that it was going to happen, these lymph nodes are enlarged and not going away. Biopsy must happen.
Still. That's a cancer word.
Bugger.
I got a bunch of blood tests back last night and they were allll normal. Yeah! I don't know what that means but I'll take it! The Thyroglobulin test was not normal, it was .9. NOT the number I expected, that's super low and weird. I don't know what it means, going to have to do some research today.
After Thyroglobulin, my TSH was 23.7, and my Tg was .9. So weird! They should both be high I think, or both be low. I'll have to crack the book (internet). My Free Thyroxine was 2.08. What does that mean? I have no idea.
Bugger. I want this to be simple and it's not so far. I want something that points me solidly on one path and nothing is. So frustrating.
I can say that my thyroglobulin should be headed down, not up. My previous tests were .3, .7 and now .9. Gives me the shivers. That's not so great.
Still. That's a cancer word.
Bugger.
I got a bunch of blood tests back last night and they were allll normal. Yeah! I don't know what that means but I'll take it! The Thyroglobulin test was not normal, it was .9. NOT the number I expected, that's super low and weird. I don't know what it means, going to have to do some research today.
After Thyroglobulin, my TSH was 23.7, and my Tg was .9. So weird! They should both be high I think, or both be low. I'll have to crack the book (internet). My Free Thyroxine was 2.08. What does that mean? I have no idea.
Bugger. I want this to be simple and it's not so far. I want something that points me solidly on one path and nothing is. So frustrating.
I can say that my thyroglobulin should be headed down, not up. My previous tests were .3, .7 and now .9. Gives me the shivers. That's not so great.
Tuesday, September 24, 2013
Doctor's Appointment
So today I met with my family practice doc, Dr. B, to discuss some other symptoms that are up right now. In combination with the enlarged lymph nodes, I get these weird night chills. I am so cold that I am covered in goosebumps and shivering hard, and under my electric blanket (on high), with blankets piled on top, snuggled next to my husband too. I just feel like I can't get warm. Then I fall asleep and wake up in a wet sweat from head to toe, and after I cool down, I sleep just fine after that. It's random, it happens a couple of times a week, and when I suggested it to the endocrinologist she said something along the lines of, "that needs to be checked out, but not here, today." It's just not her area. So I took the hint and made an appointment. Today was the day.
The doc examined all of my lymph nodes and in my chart wrote that the ones in my neck and face are enlarged. I have lymph nodes in my face?! She is doing some blood work and based on those results we will need to look at a chest and abdominal x-ray, which... I have some feelings about. Nothing makes you more skittish about x-ray than having had cancer, let me tell you. But right now I'm just going to sit with this and wait and see what these results say. There was a time when I expected my results to be normal, and unfortunately... I don't anymore. I am ready for all the possibilities. It kind of sucks, like maybe some innocence was taken away by having had cancer.
So she did throw out the big "L" word, 'lymphoma', I was hoping not to hear. We're not looking for that specifically, we're looking for ALL possibilities, but something is definitely up. I'm hoping between my family practice doc and my endo we can figure out what's happening.
Randy asked me, "How are you?" I felt really okay until he asked me, and then I started to cry. So just.. don't ask me, unless you are ready for tears, because I really am okay, I really am- and the tears are right under the surface.
Assuming all the results are normal, we should have them all back by tomorrow night. Let's hope for that.
The doc examined all of my lymph nodes and in my chart wrote that the ones in my neck and face are enlarged. I have lymph nodes in my face?! She is doing some blood work and based on those results we will need to look at a chest and abdominal x-ray, which... I have some feelings about. Nothing makes you more skittish about x-ray than having had cancer, let me tell you. But right now I'm just going to sit with this and wait and see what these results say. There was a time when I expected my results to be normal, and unfortunately... I don't anymore. I am ready for all the possibilities. It kind of sucks, like maybe some innocence was taken away by having had cancer.
So she did throw out the big "L" word, 'lymphoma', I was hoping not to hear. We're not looking for that specifically, we're looking for ALL possibilities, but something is definitely up. I'm hoping between my family practice doc and my endo we can figure out what's happening.
Randy asked me, "How are you?" I felt really okay until he asked me, and then I started to cry. So just.. don't ask me, unless you are ready for tears, because I really am okay, I really am- and the tears are right under the surface.
Assuming all the results are normal, we should have them all back by tomorrow night. Let's hope for that.
Monday, September 23, 2013
For tracking
Just because going through my blog over time has been helpful because I've included details, I'll throw this in there. My TSH result on Friday was 23.7. That's crazy, but as far as post-Thyrogen, I understand it's actually quite low.
No clue what it means, if anything. Doubtful it does. Need more info!
No clue what it means, if anything. Doubtful it does. Need more info!
Sunday, September 22, 2013
Forgot to mention
I forgot to mention that I had my blood draw Friday. The tech told me my TSH would be in on Friday afternoon/evening, and the fact that I haven't seen it yet tells me it was flagged as out of the range of normal. I think that's to be expected? I'm not sure. I'm still trying to wrap my mind around all this. I'm not worrying right now. It's not that I've decided not to, it's just... not coming up. We'll figure it out eventually. Today, I don't want any moments stolen by the impotence of worry.
Feeling happy
The nice thing about all of this is that since I know what's ahead, pretty much regardless of whether I have cancer and whether or not it's metastasized, I know what the care trajectory is. It's pretty much a menagerie of surgery, radiation, and watching. It can come in many orders, it can come more than once, but that's pretty much it. Let's face it, we're talking about a cancer with a very high 90+% survival rate, even with recurrence. (It's still cancer, there fear that you will be in that minority still very much exists, especially after you think you would never get cancer, and then you do. Suddenly, everything is on the table.)
I told my aunt that I am 'defenseless'. When something lands on me, I burst into tears and cry like no one's watching, it doesn't seem to matter where I am anymore. I don't have the high walls that I used to hide my tears behind in place anymore, this whole adventure has knocked them solidly down. In the middle of those spaces, I feel really happy- lucky - blessed- full - different - changed - loved - valued - transitional - joyful.
I can't say I'm depressed. I have hard days, many of which I share here. But mostly this last week or so, I'm having great days. Not just good days, but great days, where everything seems possible, and where I just feel happy about getting to do the basic things like vacuum my floor or have dinner ready before Randy gets home. These things tickle me and make me feel pleased with myself. Sitting with my birth center partners and letting the challenge of working with a new group wash over me, but not silence me, I get to just enjoy the process. I get to be present, and I get to choose to let the moment fill me up, rather than break me down. I can't choose it all the time, but I can choose it now, and I am.
When my daughter climbs in bed with me in the morning and rubs her legs against mine, and our skin feels so good together as her hair covers my pillow and she kisses my nose until I wake up, or when the boys come home from school and think to ask me how my day was, or even hug me for a long time, thank me for cooking dinner, when my husband's face lights up when he sees me - these are the moments that make up the rich colors of my life. The other ones do too, the hard ones, but these ones dominate.
We really are all things. All things.
I told my aunt that I am 'defenseless'. When something lands on me, I burst into tears and cry like no one's watching, it doesn't seem to matter where I am anymore. I don't have the high walls that I used to hide my tears behind in place anymore, this whole adventure has knocked them solidly down. In the middle of those spaces, I feel really happy- lucky - blessed- full - different - changed - loved - valued - transitional - joyful.
I can't say I'm depressed. I have hard days, many of which I share here. But mostly this last week or so, I'm having great days. Not just good days, but great days, where everything seems possible, and where I just feel happy about getting to do the basic things like vacuum my floor or have dinner ready before Randy gets home. These things tickle me and make me feel pleased with myself. Sitting with my birth center partners and letting the challenge of working with a new group wash over me, but not silence me, I get to just enjoy the process. I get to be present, and I get to choose to let the moment fill me up, rather than break me down. I can't choose it all the time, but I can choose it now, and I am.
When my daughter climbs in bed with me in the morning and rubs her legs against mine, and our skin feels so good together as her hair covers my pillow and she kisses my nose until I wake up, or when the boys come home from school and think to ask me how my day was, or even hug me for a long time, thank me for cooking dinner, when my husband's face lights up when he sees me - these are the moments that make up the rich colors of my life. The other ones do too, the hard ones, but these ones dominate.
We really are all things. All things.
Friday, September 20, 2013
Signs, signs.
Driving down the road from my blood draw and I see a car turning off to my right. On the back window it says, in great big white letters,
Cancer Free Mom & Wife!!
Maybe it's a sign. :)
Cancer Free Mom & Wife!!
Maybe it's a sign. :)
Thursday, September 19, 2013
Dull roar
Ahh... day to day. Letting things go. Making some decisions about my future that mean shifting and changing, but feel good. Being home more, and not because I have 'things to do' or because I haven't been home in a while, but because it's safe and cozy here, and I don't want to talk to people, or visit.
Today I ask myself, "What if I don't have cancer?"
Yesterday I had some life-changing realizations - facilitated by the fact that I am cracked open by this mystery unfolding in front of me. Am I going to have to dance with cancer again? I'm already on the floor, waiting to see if my partner will step up, apparently. It's okay, because even if I do not have cancer, I do, at the same time. I know that's hard to understand, but it makes complete sense to me.
My entire life I've worried that if I was too much, too big, too much personality, too high-need, that the people around me would eventually leave. I would tire them out, they would run out of love for me. This thought has burdened me my entire life and when I had cancer before, made it hard for me to talk about what was happening for me. I felt like I was taking up too much time in people's minds and hearts, that eventually they would get sick of thinking about me and all of the 'big' stuff in my life. Then my mother died, and it was the same thing. I knew that I was entitled to feel sad, but not so entitled to talk about how my soul is crushed and ground into pieces I do not recognize, and that I am slowly rebuilding but I do not know the architect.
A friend said to me recently, "Kristina, you're just having your life, just like everyone else. You didn't choose cancer, you didn't choose for your mom to die. This is just what's happening." It really hit me in that moment, that I am not special- not in some way that means people will stop loving me when they wouldn't stop loving someone else. That I'm somehow not worthy of being worried about and cared for, and that I will exhaust people.
Yesterday I was driving to a friends and I was kind of dreading the visit because I knew we'd just talk about what was going on for me, and I worried she'd want to talk about anything but that. She and I talk a lot. Then I imagined her worrying about all of the things I'm worrying about right now, and asked myself, "Would I ever NOT want to hear her process what was going on in her life?" Not for a second would I feel that way. If I did, it would be me being tired, but not her being too much. I burst into tears driving down the road.
These issues have plagued me my whole life, really causing me to hold back from needing anyone other than myself or my husband. I worry about exhausting him too, that if I get cancer one more time, or I get a worse kind, or some other dreadful thing happens to me, that he'll leave me because it's just too much work to be my husband. He reassures me when we talk about it but I just couldn't believe it.
Now I feel like I've stopped dragging this giant stack of luggage behind me, I just set it down gently and stepped away. I haven't walked far, I'm still in the midst of adjusting my center of gravity around this shift in weight. Who will I become if I can ask for help? If I can be emotionally naked without worrying that people will take care of themselves best by leaving me behind?
So crazy, this cancer-venture. It never fails to give me enormous opportunities to move things around in my head and my heart. It doesn't matter whether I have cancer right now or not, I'm still in the midst of experiencing it all, being churned up, isolating, reducing, becoming smaller so that I can retreat and restore. Hopefully some day I can do all that without the threat of a life threatening illness. ;)
Speaking of which, I have my blood draw tomorrow. I wasn't nervous at all about it until about five minutes ago when I realized that there could be information that arises that points us in a definite 'be concerned' direction. It won't point us necessarily in a 'don't be concerned' because of what it's looking for and how, but depending on the numbers we get... well, suffice it to say, there is a little bit riding on the numbers being super low. The last thyroglobulin number was .7. Let's keep it there, okay?
As soon as I know, you'll know.
Today I ask myself, "What if I don't have cancer?"
Yesterday I had some life-changing realizations - facilitated by the fact that I am cracked open by this mystery unfolding in front of me. Am I going to have to dance with cancer again? I'm already on the floor, waiting to see if my partner will step up, apparently. It's okay, because even if I do not have cancer, I do, at the same time. I know that's hard to understand, but it makes complete sense to me.
My entire life I've worried that if I was too much, too big, too much personality, too high-need, that the people around me would eventually leave. I would tire them out, they would run out of love for me. This thought has burdened me my entire life and when I had cancer before, made it hard for me to talk about what was happening for me. I felt like I was taking up too much time in people's minds and hearts, that eventually they would get sick of thinking about me and all of the 'big' stuff in my life. Then my mother died, and it was the same thing. I knew that I was entitled to feel sad, but not so entitled to talk about how my soul is crushed and ground into pieces I do not recognize, and that I am slowly rebuilding but I do not know the architect.
A friend said to me recently, "Kristina, you're just having your life, just like everyone else. You didn't choose cancer, you didn't choose for your mom to die. This is just what's happening." It really hit me in that moment, that I am not special- not in some way that means people will stop loving me when they wouldn't stop loving someone else. That I'm somehow not worthy of being worried about and cared for, and that I will exhaust people.
Yesterday I was driving to a friends and I was kind of dreading the visit because I knew we'd just talk about what was going on for me, and I worried she'd want to talk about anything but that. She and I talk a lot. Then I imagined her worrying about all of the things I'm worrying about right now, and asked myself, "Would I ever NOT want to hear her process what was going on in her life?" Not for a second would I feel that way. If I did, it would be me being tired, but not her being too much. I burst into tears driving down the road.
These issues have plagued me my whole life, really causing me to hold back from needing anyone other than myself or my husband. I worry about exhausting him too, that if I get cancer one more time, or I get a worse kind, or some other dreadful thing happens to me, that he'll leave me because it's just too much work to be my husband. He reassures me when we talk about it but I just couldn't believe it.
Now I feel like I've stopped dragging this giant stack of luggage behind me, I just set it down gently and stepped away. I haven't walked far, I'm still in the midst of adjusting my center of gravity around this shift in weight. Who will I become if I can ask for help? If I can be emotionally naked without worrying that people will take care of themselves best by leaving me behind?
So crazy, this cancer-venture. It never fails to give me enormous opportunities to move things around in my head and my heart. It doesn't matter whether I have cancer right now or not, I'm still in the midst of experiencing it all, being churned up, isolating, reducing, becoming smaller so that I can retreat and restore. Hopefully some day I can do all that without the threat of a life threatening illness. ;)
Speaking of which, I have my blood draw tomorrow. I wasn't nervous at all about it until about five minutes ago when I realized that there could be information that arises that points us in a definite 'be concerned' direction. It won't point us necessarily in a 'don't be concerned' because of what it's looking for and how, but depending on the numbers we get... well, suffice it to say, there is a little bit riding on the numbers being super low. The last thyroglobulin number was .7. Let's keep it there, okay?
As soon as I know, you'll know.
Wednesday, September 18, 2013
Cold
I think my medication is off. That could be a big reason why I feel cold all the time. It's not like, ooh, it's chilly today! when no one else is cold. It's a giant chill that washes over me, breaking my entire body out in goosebumps. Nothing warms me up, it lasts for a little while and then goes away.
In December I got very lazy with my medication and my TSH went up to 20. That's a pretty crazy number, labs look for a range of .5 - 4.0 as a 'normal' range. I didn't feel good, I was constipated and very sensitive to cold. I didn't break out in chills like this, but if it was even remotely cold, I would experience it as pain. It was sucky, I like to be cold!
So this is weird, but I am just wondering if maybe it's that my medication is off and things are jacked up. I hope so, that's fixable! I'll take easy fixes. ;)
Kind of lost my shit at my husband last night about kale. I think I'm a little tense. He says I need a good cry and I am sure he's right, it just never wants to come at a time I'm not with other people and can't just burst into long, sobby tears. I'm talking, grocery store, not hanging with friends. I'm NOT going to fall apart in a grocery store.
Today will be great. I don't have to think about it, so I'm going to hang out with a friend and come home and clean and cook dinner and hang out with my family, and go to bed. That sounds perfect. :)
In December I got very lazy with my medication and my TSH went up to 20. That's a pretty crazy number, labs look for a range of .5 - 4.0 as a 'normal' range. I didn't feel good, I was constipated and very sensitive to cold. I didn't break out in chills like this, but if it was even remotely cold, I would experience it as pain. It was sucky, I like to be cold!
So this is weird, but I am just wondering if maybe it's that my medication is off and things are jacked up. I hope so, that's fixable! I'll take easy fixes. ;)
Kind of lost my shit at my husband last night about kale. I think I'm a little tense. He says I need a good cry and I am sure he's right, it just never wants to come at a time I'm not with other people and can't just burst into long, sobby tears. I'm talking, grocery store, not hanging with friends. I'm NOT going to fall apart in a grocery store.
Today will be great. I don't have to think about it, so I'm going to hang out with a friend and come home and clean and cook dinner and hang out with my family, and go to bed. That sounds perfect. :)
Tuesday, September 17, 2013
Swinging
I feel like I'm swingingly wildly from doing a good job letting go and moving forward at an organic pace, meeting the moment, and then clutching at anything that seems remotely familiar while battling the urge to burst into loud and what will surely be, public tears.
I do not feel that desperate urge to scream to the world that I have cancer. For one thing, I don't know if I do. Emotionally, it feels the same. It feels like I already know I have cancer. It's not like manifesting it, it's knowing that like Schrodinger's cat, I will always be IN and OUT of the cancer box. Forever. So whether I have it or not, both are true, and I get to have all the feelings and worries that come along with that.
Yesterday and today I had my Thyrogen shots. I'm going to write about it a bit because information just does not stick in my head these days and repeating myself helps, hopefully. I realize you may have read this here before but it helps me, so just bear with it.
The thyroid has these little glands on it called parathyroids. They don't get removed during a thyroidectomy, the thyroid tissue gets carved away from them so they remain intact. Consequently some cells get left behind. Many patients have radiation treatment which ablates these cells to make sure that absolutely no thyroid is left where cancer can resume growing.
I did not have radiation as my cancer was on the borderline of what they feel 'requires' radiation. They left it up to me and I decided not to have it. Thus, there are thyroid cells left behind. The Thyrogen shot acts like TSH (thyroid stimulating hormone), basically telling the remaining thyroid cells to do their thing. Thyroid cells (cancerous or not) will release thyroglobulin in this situation, so when we do a blood test and look for Tg, we know that there are some thyroid cells remaining (but it doesn't indicate whether or not they're cancerous).
You want multiple readings over time, and you want it to trend downward.
I looked at my test results again today and the first one I had was .3, the second was .7. I'll have the blood test on Friday and once I have that number, should be able to see a trend. It should trend downward. If it trends up, that's no bueno, so that's what's we're looking for with this next blood draw.
I hope that all makes sense. That's what I'm in the midst of right now. The shots don't have much in the way of side effects for most people, just some fatigue and flu-like symptoms. I am having that, just a bit- queasiness and a general 'off' feeling.
I've started talking about it all a little more freely. I've spent my entire life worrying that I was burdening people any time I needed something. Surely they'd run out of tolerance for my neediness and go away from my life. I have always tried hard to just take care of myself and not need other people. When I was 35 weeks pregnant and finding out at a doctor's appointment that I needed to be rushed away for a cesarean because my baby was in distress, I didn't call anyone, because I didn't want to bother anyone. I figured they'd be irritated to have to find babysitters or leave work or whatever, so I figured I'd just go it alone if Randy couldn't make it on time. The irony is that if a friend told me that story, I'd be crushed to think that she thought she'd bother me- but the shoe is on this foot and that's exactly how I felt.
So this whole thing is hard for me. I don't want to wear anyone out by talking about it, and I remember feeling this way last time, too. I have a therapist this time but she doesn't know anything about all of this yet, so that will be a fun appointment next week.
I had a talk with a friend the other day who said, "Kristina, you're not burdening other people by just living your life. You're just responding to what's happening in your life. There's nothing unusual about that. We're all just doing that."
I felt like I finally got it, I finally realized that it's okay for me to say that this is happening to me right now. If people feel burdened by my needs, they'll take care of themselves and move on, but it doesn't mean I can't or shouldn't have the needs I do. I need connection and to laugh, and to be able to fall apart while driving down the road unexpectedly, and to suck my tears in when it's inconvenient to be a mess and not be questioned when I do it, and to talk about a million other topics and come back to this one over and over.
I'm grateful to have come as far as I have in the last year that I can be with this whole thing in a new way, even if I have to be with it in the old way, too. I was telling Randy that I like to do things the 'optimal' way- the way that will leave everyone feeling heard and supported and connected, and if I can get by without taking a hit, awesome. Today I just am getting through, and sometimes I hurt people's feelings or overreact and I don't mean to, but I no longer restrain myself to the point of always responding 'correctly' with calmness, generosity, and compassion. Sometimes I just.don't.have.it. Sometimes all I can do is walk away and close a door and breathe deeply, leaving the other person to wonder what tornado just swept through the house.
Somehow this feels more authentic to me, to react instead of.. respond. I never got to do that, and here it is, being thrust on me- and while it's hard, it also is very liberating.
I do not feel that desperate urge to scream to the world that I have cancer. For one thing, I don't know if I do. Emotionally, it feels the same. It feels like I already know I have cancer. It's not like manifesting it, it's knowing that like Schrodinger's cat, I will always be IN and OUT of the cancer box. Forever. So whether I have it or not, both are true, and I get to have all the feelings and worries that come along with that.
Yesterday and today I had my Thyrogen shots. I'm going to write about it a bit because information just does not stick in my head these days and repeating myself helps, hopefully. I realize you may have read this here before but it helps me, so just bear with it.
The thyroid has these little glands on it called parathyroids. They don't get removed during a thyroidectomy, the thyroid tissue gets carved away from them so they remain intact. Consequently some cells get left behind. Many patients have radiation treatment which ablates these cells to make sure that absolutely no thyroid is left where cancer can resume growing.
I did not have radiation as my cancer was on the borderline of what they feel 'requires' radiation. They left it up to me and I decided not to have it. Thus, there are thyroid cells left behind. The Thyrogen shot acts like TSH (thyroid stimulating hormone), basically telling the remaining thyroid cells to do their thing. Thyroid cells (cancerous or not) will release thyroglobulin in this situation, so when we do a blood test and look for Tg, we know that there are some thyroid cells remaining (but it doesn't indicate whether or not they're cancerous).
You want multiple readings over time, and you want it to trend downward.
I looked at my test results again today and the first one I had was .3, the second was .7. I'll have the blood test on Friday and once I have that number, should be able to see a trend. It should trend downward. If it trends up, that's no bueno, so that's what's we're looking for with this next blood draw.
I hope that all makes sense. That's what I'm in the midst of right now. The shots don't have much in the way of side effects for most people, just some fatigue and flu-like symptoms. I am having that, just a bit- queasiness and a general 'off' feeling.
I've started talking about it all a little more freely. I've spent my entire life worrying that I was burdening people any time I needed something. Surely they'd run out of tolerance for my neediness and go away from my life. I have always tried hard to just take care of myself and not need other people. When I was 35 weeks pregnant and finding out at a doctor's appointment that I needed to be rushed away for a cesarean because my baby was in distress, I didn't call anyone, because I didn't want to bother anyone. I figured they'd be irritated to have to find babysitters or leave work or whatever, so I figured I'd just go it alone if Randy couldn't make it on time. The irony is that if a friend told me that story, I'd be crushed to think that she thought she'd bother me- but the shoe is on this foot and that's exactly how I felt.
So this whole thing is hard for me. I don't want to wear anyone out by talking about it, and I remember feeling this way last time, too. I have a therapist this time but she doesn't know anything about all of this yet, so that will be a fun appointment next week.
I had a talk with a friend the other day who said, "Kristina, you're not burdening other people by just living your life. You're just responding to what's happening in your life. There's nothing unusual about that. We're all just doing that."
I felt like I finally got it, I finally realized that it's okay for me to say that this is happening to me right now. If people feel burdened by my needs, they'll take care of themselves and move on, but it doesn't mean I can't or shouldn't have the needs I do. I need connection and to laugh, and to be able to fall apart while driving down the road unexpectedly, and to suck my tears in when it's inconvenient to be a mess and not be questioned when I do it, and to talk about a million other topics and come back to this one over and over.
I'm grateful to have come as far as I have in the last year that I can be with this whole thing in a new way, even if I have to be with it in the old way, too. I was telling Randy that I like to do things the 'optimal' way- the way that will leave everyone feeling heard and supported and connected, and if I can get by without taking a hit, awesome. Today I just am getting through, and sometimes I hurt people's feelings or overreact and I don't mean to, but I no longer restrain myself to the point of always responding 'correctly' with calmness, generosity, and compassion. Sometimes I just.don't.have.it. Sometimes all I can do is walk away and close a door and breathe deeply, leaving the other person to wonder what tornado just swept through the house.
Somehow this feels more authentic to me, to react instead of.. respond. I never got to do that, and here it is, being thrust on me- and while it's hard, it also is very liberating.
Monday, September 16, 2013
Sick of myself
I know I write for me, and not for you. I have to admit that as churned up as I am right now I can't bring myself to come here and talk about it because it just feels like the same old shit we've already been through together. It exhausts me, it must be exhausting for you. I feel like all I can say is the same thing over and over... I know I'm processing, but honestly I am kind of sick of myself.
This whole process is so intense and in its own way traumatizing- to a smaller scale but still I feel like something is slowly being sucked out of me that I will have to work very hard to shove back in. My neck is just so uncomfortable. Not constantly but when it kicks up, it is actually very distracting.
Because I have no answers, I still am in the space of wondering if this is all in my head- if I am just somehow crazy and witchy enough to manifest my own symptoms of something that doesn't exist. Like a pseudo-pregnancy. All the symptoms, none of the baby. Maybe this is the same thing. People ask me, "What does your intuition say?" Every time I hear it, my stomach drops and I feel a little like throwing up. No 'thought' appears necessarily but my body knows something is wrong, even if my head is an earthquake of confusion.
In some ways this is harder than last time. No, it really is harder. Last time I would have moments of fear, that I could have cancer (oh dreaded cancer!) and that it could be the worst kind and that I would have to tell my kids that I was going to die. Those moments weren't too often and didn't last too long. I remember last year as having more edges- edges in between the thoughts, and fear, one moment separated from the next.
This time I feel so run down by it. I'm grieving the death of my mother as I have to let her beloved dog be moved to someone else's home and life and I will likely never see him again. I have to take her house down, and sell the property where she lived the happiest years of her life with her husband, and where her ashes lay. It's as if she's dying again, because the grief is just barely under the surface and springs up dramatically whenever I start to talk in any depth about this.
Layered with that is this underlying drone. Sometimes in the quiet of my heart, when things aren't busy and distracting, that drone rises up and drives out everything else. I feel weighted down by the idea that I'm back here again. When I first saw the endocrinologist, it hadn't quite hit me that I was being tested again for cancer, until I sat down and wrote those words here. Now that I know it, and that my future for a little while will be moving around appointments and tests and waiting for results, it just feels like so much.
So I think about it a lot, and when I am too busy to think about it and I get the chance to make love, or laugh my head off, or see something so beautiful it cracks my heart right open, it is delicious and my heart feels lighter. Those experiences quiet that background noise, and I am grateful that I can do both things. I don't have to miss out on my life and my daughter's first day of Kindergarten or a trip away with my husband, or coffee with a friend, because I am sad or worried. I just keep living.
When the moment ends, and the quiet rises up, and I'm sitting alone in my car, there is no volume at which I can set the music this time that drowns it out. I sing as loud as I can but it doesn't work, it just makes me more sad. Maybe I just need to feel REALLY sad and then I can take the pressure off and let go a bit, because this is literally exhausting me. I am tired all the time, I got to bed early and crash hard. I am sure it's the pace I'm working, but it's also just emotional exhaustion.
I want to talk about it all, and I don't. I am going to say all of the same things every time, and it makes me feel better to say it again, and it also feels like a waste of breath, and it feels tiresome. I'm sick of sitting in this place and ready for some movement.
Today I will get my first Thyrogen shot and tomorrow my second. Friday I will get my blood drawn and next week we will have some information to look at. It won't be anything conclusive and I'm trying hard not to read into anything because I just don't have enough information to have a good context. What I'm most looking forward to/dreading is the ultrasound. IF they find something, I'm back on the biopsy/cancer train, and if they find nothing, what the fuck is all this and how do I make it stop??
30% of people with the kind of cancer I had have recurrences. The prognosis is still fabulous. I am not worried about dying. I'm worried about cancer, and biopsies, and being in pain, and radiation treatments that will poison my body. I'm worried that I will never get to NOT worry about this. It's wearing on me.
This whole process is so intense and in its own way traumatizing- to a smaller scale but still I feel like something is slowly being sucked out of me that I will have to work very hard to shove back in. My neck is just so uncomfortable. Not constantly but when it kicks up, it is actually very distracting.
Because I have no answers, I still am in the space of wondering if this is all in my head- if I am just somehow crazy and witchy enough to manifest my own symptoms of something that doesn't exist. Like a pseudo-pregnancy. All the symptoms, none of the baby. Maybe this is the same thing. People ask me, "What does your intuition say?" Every time I hear it, my stomach drops and I feel a little like throwing up. No 'thought' appears necessarily but my body knows something is wrong, even if my head is an earthquake of confusion.
In some ways this is harder than last time. No, it really is harder. Last time I would have moments of fear, that I could have cancer (oh dreaded cancer!) and that it could be the worst kind and that I would have to tell my kids that I was going to die. Those moments weren't too often and didn't last too long. I remember last year as having more edges- edges in between the thoughts, and fear, one moment separated from the next.
This time I feel so run down by it. I'm grieving the death of my mother as I have to let her beloved dog be moved to someone else's home and life and I will likely never see him again. I have to take her house down, and sell the property where she lived the happiest years of her life with her husband, and where her ashes lay. It's as if she's dying again, because the grief is just barely under the surface and springs up dramatically whenever I start to talk in any depth about this.
Layered with that is this underlying drone. Sometimes in the quiet of my heart, when things aren't busy and distracting, that drone rises up and drives out everything else. I feel weighted down by the idea that I'm back here again. When I first saw the endocrinologist, it hadn't quite hit me that I was being tested again for cancer, until I sat down and wrote those words here. Now that I know it, and that my future for a little while will be moving around appointments and tests and waiting for results, it just feels like so much.
So I think about it a lot, and when I am too busy to think about it and I get the chance to make love, or laugh my head off, or see something so beautiful it cracks my heart right open, it is delicious and my heart feels lighter. Those experiences quiet that background noise, and I am grateful that I can do both things. I don't have to miss out on my life and my daughter's first day of Kindergarten or a trip away with my husband, or coffee with a friend, because I am sad or worried. I just keep living.
When the moment ends, and the quiet rises up, and I'm sitting alone in my car, there is no volume at which I can set the music this time that drowns it out. I sing as loud as I can but it doesn't work, it just makes me more sad. Maybe I just need to feel REALLY sad and then I can take the pressure off and let go a bit, because this is literally exhausting me. I am tired all the time, I got to bed early and crash hard. I am sure it's the pace I'm working, but it's also just emotional exhaustion.
I want to talk about it all, and I don't. I am going to say all of the same things every time, and it makes me feel better to say it again, and it also feels like a waste of breath, and it feels tiresome. I'm sick of sitting in this place and ready for some movement.
Today I will get my first Thyrogen shot and tomorrow my second. Friday I will get my blood drawn and next week we will have some information to look at. It won't be anything conclusive and I'm trying hard not to read into anything because I just don't have enough information to have a good context. What I'm most looking forward to/dreading is the ultrasound. IF they find something, I'm back on the biopsy/cancer train, and if they find nothing, what the fuck is all this and how do I make it stop??
30% of people with the kind of cancer I had have recurrences. The prognosis is still fabulous. I am not worried about dying. I'm worried about cancer, and biopsies, and being in pain, and radiation treatments that will poison my body. I'm worried that I will never get to NOT worry about this. It's wearing on me.
Friday, September 13, 2013
Building up
It's been a beautiful, challenging, hard, delicious week. Randy and I managed to steal away to Nevada & Utah for five whole days alone- five days with no kids! That hasn't happened since we first got together, directly after which, we got pregnant. ;) It was wonderful to have that focused time to just be a couple and have conversations sans interruptions.
As we prepared for the trip I had a few concerns (mostly anxiety based) that managed to melt off as we got closer to leaving. I was excited to go and we drove straight down to Wendover, NV in one swoop - 14 long hours of driving.
What I didn't expect was that this would give my brain time to mull over everything that's coming. Not from a planning perspective.. I don't even think I was thinking about it, per se. It just was churning in the back of my mind. My lymph nodes were really bothering me on the way down, so much so that I took Advil because I was so uncomfortable. This of course distressed me.. why are my lymph nodes swelling and why are they hurting? I know the likely answers, the 'crow flies' answers that go from symptom to diagnosis without passing go, and I just have to go down that rabbit hole a little bit from time to time.
I think I thought that after my endo appointment that I would be reassured that I was 'just being dramatic' and that the lymph nodes would settle down because they're only activated because I'm a freak. But it didn't reassure me, and they're acting up still, and this just keeps me processing through the possible outcomes. Add to this that I had mentioned some other random symptoms to the endo and she made a face, paused and said, "Well.. that's definitely a symptom of other things that should be checked out, but for our purposes I don't think it's part of this." She didn't say more but it left me wondering what the hell she was talking about.
Basically at night, I can get very, very cold. I lay in bed and I shiver hard and for a long time, no matter how high my electric blanket is on, no matter how many blankets are piled on top of that - it's a fever-like chill with no fever. After I fall asleep I wake up in a wet sweat from head to toe. This is relatively recent, it started not long before the swollen/angry lymph nodes. I sometimes have a deep itch all over my chest that I can't scratch away. It's not all the time but it is enough that I noticed it and wondered if I was having an allergic reaction, it was so intense.
Unfortunately I visited that quack, Dr. Google, who puts these two things together in ugly ways. I guess I needed the reminder that Dr. Google isn't my friend, and to stay the hell away from him at all costs. And so I am... but I can't unsee what it said, and in concert with my endocrinologist's comment, I'm a wee bit nervous.
Instead of dancing with that too much, I am focusing on one thing at a time. I went ahead and made an appointment with my family practice doc, to whom I will present the symptoms and let her decide which track to take. I'm not going to get really worried unless she is, but this hangs around the back of my mind like a little bug buzzing my ear now and then.
The thyroid cancer issue- my symptoms now are basically that I have now, several swollen lymph nodes that aren't going away and are at times painful. Sometimes a mild dull ache, sometimes an intense pinching feeling, it always comes and goes. Some days it doesn't hurt at all, some days it hurts off and on all day. I'm also clearing my throat many times per day which makes me feel like one of those grunty old ladies on a public bus who is snorting and coughing and making all kinds of gross noises just to breathe. Blech.
So the plan for now:
Monday & Tuesday I will have Thyrogen shots. These will stimulate any remaining thyroid (or cancer) cells to release TSH, which they can then measure to track over time. My current levels went from .2 to .7. Other than the fact that you do not want it to rise over time (because this indicates the presence of cancer), I don't know how clinically significant that change is, or if it's significant at all. This test basically gives me two shots over two days, and then a blood draw- and that number will mean more than the other two do. It's not a diagnosis tool, more a tracking-over-time tool but it can be informative in the short term with context, too.
On the 24th I meet with my family practice doctor to look into these other symptoms. Not really getting too far down the road with this in my head, just leaving it to the doctor. I really can't worry about one more thing.
On October 4th I will have the ultrasound that will look at all of the lymph nodes in my neck and especially these enlarged one, to look for size and signs of micro-calcifications which can indicate the presence of cancer.
I think the thing that sucks the most about this entire thing is that anyone can have swollen lymph nodes and be just fine. I am sad at how much time and energy and heartbreak I go through having to worry again and again if the cancer has come back.
I read on a bulletin board I visit that a woman was talking about how worried she was all the time, and someone responded that they felt like they'd turned the 'worry corner'. I loved reading that, it reminded me that it won't be like this all the time. I'm not even out of remission yet, I have four more years of clean bills of health to get through before I can say I'm cancer free, really, so it's okay if I'm a little freaked out. I had cancer less than a year ago.
In the meantime, along with all of these appointments are many other things equally energy-draining going on concurrently. I expect the next six weeks to be a bit of a challenge and I'm trying to wrap my mind around getting ready to feel good, rather than expecting to feel bad. It's not easy when all I have is worries, and no information, but I'm trying.
As we prepared for the trip I had a few concerns (mostly anxiety based) that managed to melt off as we got closer to leaving. I was excited to go and we drove straight down to Wendover, NV in one swoop - 14 long hours of driving.
What I didn't expect was that this would give my brain time to mull over everything that's coming. Not from a planning perspective.. I don't even think I was thinking about it, per se. It just was churning in the back of my mind. My lymph nodes were really bothering me on the way down, so much so that I took Advil because I was so uncomfortable. This of course distressed me.. why are my lymph nodes swelling and why are they hurting? I know the likely answers, the 'crow flies' answers that go from symptom to diagnosis without passing go, and I just have to go down that rabbit hole a little bit from time to time.
I think I thought that after my endo appointment that I would be reassured that I was 'just being dramatic' and that the lymph nodes would settle down because they're only activated because I'm a freak. But it didn't reassure me, and they're acting up still, and this just keeps me processing through the possible outcomes. Add to this that I had mentioned some other random symptoms to the endo and she made a face, paused and said, "Well.. that's definitely a symptom of other things that should be checked out, but for our purposes I don't think it's part of this." She didn't say more but it left me wondering what the hell she was talking about.
Basically at night, I can get very, very cold. I lay in bed and I shiver hard and for a long time, no matter how high my electric blanket is on, no matter how many blankets are piled on top of that - it's a fever-like chill with no fever. After I fall asleep I wake up in a wet sweat from head to toe. This is relatively recent, it started not long before the swollen/angry lymph nodes. I sometimes have a deep itch all over my chest that I can't scratch away. It's not all the time but it is enough that I noticed it and wondered if I was having an allergic reaction, it was so intense.
Unfortunately I visited that quack, Dr. Google, who puts these two things together in ugly ways. I guess I needed the reminder that Dr. Google isn't my friend, and to stay the hell away from him at all costs. And so I am... but I can't unsee what it said, and in concert with my endocrinologist's comment, I'm a wee bit nervous.
Instead of dancing with that too much, I am focusing on one thing at a time. I went ahead and made an appointment with my family practice doc, to whom I will present the symptoms and let her decide which track to take. I'm not going to get really worried unless she is, but this hangs around the back of my mind like a little bug buzzing my ear now and then.
The thyroid cancer issue- my symptoms now are basically that I have now, several swollen lymph nodes that aren't going away and are at times painful. Sometimes a mild dull ache, sometimes an intense pinching feeling, it always comes and goes. Some days it doesn't hurt at all, some days it hurts off and on all day. I'm also clearing my throat many times per day which makes me feel like one of those grunty old ladies on a public bus who is snorting and coughing and making all kinds of gross noises just to breathe. Blech.
So the plan for now:
Monday & Tuesday I will have Thyrogen shots. These will stimulate any remaining thyroid (or cancer) cells to release TSH, which they can then measure to track over time. My current levels went from .2 to .7. Other than the fact that you do not want it to rise over time (because this indicates the presence of cancer), I don't know how clinically significant that change is, or if it's significant at all. This test basically gives me two shots over two days, and then a blood draw- and that number will mean more than the other two do. It's not a diagnosis tool, more a tracking-over-time tool but it can be informative in the short term with context, too.
On the 24th I meet with my family practice doctor to look into these other symptoms. Not really getting too far down the road with this in my head, just leaving it to the doctor. I really can't worry about one more thing.
On October 4th I will have the ultrasound that will look at all of the lymph nodes in my neck and especially these enlarged one, to look for size and signs of micro-calcifications which can indicate the presence of cancer.
I think the thing that sucks the most about this entire thing is that anyone can have swollen lymph nodes and be just fine. I am sad at how much time and energy and heartbreak I go through having to worry again and again if the cancer has come back.
I read on a bulletin board I visit that a woman was talking about how worried she was all the time, and someone responded that they felt like they'd turned the 'worry corner'. I loved reading that, it reminded me that it won't be like this all the time. I'm not even out of remission yet, I have four more years of clean bills of health to get through before I can say I'm cancer free, really, so it's okay if I'm a little freaked out. I had cancer less than a year ago.
In the meantime, along with all of these appointments are many other things equally energy-draining going on concurrently. I expect the next six weeks to be a bit of a challenge and I'm trying to wrap my mind around getting ready to feel good, rather than expecting to feel bad. It's not easy when all I have is worries, and no information, but I'm trying.
Sunday, September 1, 2013
Maybe it's the rum
... but probably not. I just feel very weighted upon this evening, heavy with what is happening right now. In some ways I feel very private about it, which is odd in that I'm writing here about it and occasionally people stumble here and see what's new, and they'll know. But I don't want to have the person-to-person conversations where I have to see someone's concern, or feel like maybe I'm being too dramatic, or all the other silly ridiculous things one feels when in this limbo.
Leah is in the hospital getting her chemo and in a whole new way, this makes me so fucking sad. So sad. It feels heavy and different than last time to me, because if something is wrong, I know it will feel heavy and different for me. I don't know what it is... when people hear you have cancer 'again', they have doubts and extra worries than what they had before, because they have a feeling of having dodged a bullet in that you went into remission. When you come out of remission, somehow it 'means something'. At least, that's how it feels.
I don't want to talk about how worried I am, and I don't think I feel terribly worried for the most part but then I got to sleep and have nightmares, and in my sleep I feel myself thinking about it, and I marvel that I don't seem to be thinking about it that much in waking life but maybe I'm in denial.
I'm trying to stay busy, but tonight I'm taking the time to feel sad, because it's sad that I'll always have this hanging out over my shoulder, coloring every time I get sick, or need a blood test. Once you've had some kind of cancer, you know you can have ANY kind of cancer, and it changes everything even when you have deep faith in your ability to be healthy and whole.
Sometimes I don't know if I have that faith. I try to, but.. sometimes the worry overtakes my heart and I engage the worst case scenarios. I imagine it's only human to do so. I don't believe people who say they didn't think about a negative outcome. I don't believe them.
So I'm working tonight, and weeping into my rum and coke because even though I shouldn't be, I'm letting myself medicate my heart just this once. The ironic thing is that it's lubricating the emotions to rise to the surface, which is probably better in the long run anyway. I should just go to bed.
Here's the deal as it stands now- I'm waiting to get the call to set up my ultrasound. I've done a little asking around and apparently when done by a skilled provider and especially if they know where to look (rather than just a general neck scan), the ultrasounds can find even small issues. In my corner I have an ultrasound tech who does ALL of the neck scans for Group Health in this region so he's super skilled and fluent. If he says you're clear, you can bet on it safely. The radiology report is redundant at that point, which is highly reassuring. So I look to him to find something if there is anything, and to see if we can figure out why my lymph nodes are swollen and not going down. Maybe it's still all in my head. Maybe I'm just THAT much of a neurotic worrywart that I can manifest symptoms for nothing. Let's hope.
I have to take a test that will stimulate any remaining thyroid cells that are left behind after the surgery. It stimulates cancer cells the came way, and it won't know the difference between the two so I'm concerned that this test is more routine than helpful. Still waiting to hear from my endo on that.
Basically what happens after a thyroidectomy in patients who need it, is a radiation ablation of any remaining thyroid cells. They can continue to grow cancer so we blast those fuckers out of existence. The radiation treatment is kind of gross and I was on the edge of the 'line' where they recommend it, so I elected not to do it. Consequently I likely have thyroid cells remaining.
My understanding of this test is that its best done when there are no thyroid cells, but I could be wrong. I don't know a lot about it and I have an email out ot my doc to find out more. I don't need false positives to make me lose. my. shit. so I'm hoping to avoid that at all possible costs. If the test will be useful to us, I'll do it.
Another test I can have if my HMO offers it is a whole body scan. I would take a lower dose of radiation and then they'd do a scan of my whole body. Papillary carcinoma/thyroid cells uptake radiation so anything that lights up is a problem, basically - the hope is that nothing does. I don't actually know if this test is an option for me so it's something I need to ask about.
I know we're just taking it step by step, I know that I'm not being 'tested for cancer' except that I am, again. I can still hope that everything is fine, but I know this road and it's still fraught with switchbacks and rockslides and I can't help but be nervous.
Just hanging on, hanging in there.
Leah is in the hospital getting her chemo and in a whole new way, this makes me so fucking sad. So sad. It feels heavy and different than last time to me, because if something is wrong, I know it will feel heavy and different for me. I don't know what it is... when people hear you have cancer 'again', they have doubts and extra worries than what they had before, because they have a feeling of having dodged a bullet in that you went into remission. When you come out of remission, somehow it 'means something'. At least, that's how it feels.
I don't want to talk about how worried I am, and I don't think I feel terribly worried for the most part but then I got to sleep and have nightmares, and in my sleep I feel myself thinking about it, and I marvel that I don't seem to be thinking about it that much in waking life but maybe I'm in denial.
I'm trying to stay busy, but tonight I'm taking the time to feel sad, because it's sad that I'll always have this hanging out over my shoulder, coloring every time I get sick, or need a blood test. Once you've had some kind of cancer, you know you can have ANY kind of cancer, and it changes everything even when you have deep faith in your ability to be healthy and whole.
Sometimes I don't know if I have that faith. I try to, but.. sometimes the worry overtakes my heart and I engage the worst case scenarios. I imagine it's only human to do so. I don't believe people who say they didn't think about a negative outcome. I don't believe them.
So I'm working tonight, and weeping into my rum and coke because even though I shouldn't be, I'm letting myself medicate my heart just this once. The ironic thing is that it's lubricating the emotions to rise to the surface, which is probably better in the long run anyway. I should just go to bed.
Here's the deal as it stands now- I'm waiting to get the call to set up my ultrasound. I've done a little asking around and apparently when done by a skilled provider and especially if they know where to look (rather than just a general neck scan), the ultrasounds can find even small issues. In my corner I have an ultrasound tech who does ALL of the neck scans for Group Health in this region so he's super skilled and fluent. If he says you're clear, you can bet on it safely. The radiology report is redundant at that point, which is highly reassuring. So I look to him to find something if there is anything, and to see if we can figure out why my lymph nodes are swollen and not going down. Maybe it's still all in my head. Maybe I'm just THAT much of a neurotic worrywart that I can manifest symptoms for nothing. Let's hope.
I have to take a test that will stimulate any remaining thyroid cells that are left behind after the surgery. It stimulates cancer cells the came way, and it won't know the difference between the two so I'm concerned that this test is more routine than helpful. Still waiting to hear from my endo on that.
Basically what happens after a thyroidectomy in patients who need it, is a radiation ablation of any remaining thyroid cells. They can continue to grow cancer so we blast those fuckers out of existence. The radiation treatment is kind of gross and I was on the edge of the 'line' where they recommend it, so I elected not to do it. Consequently I likely have thyroid cells remaining.
My understanding of this test is that its best done when there are no thyroid cells, but I could be wrong. I don't know a lot about it and I have an email out ot my doc to find out more. I don't need false positives to make me lose. my. shit. so I'm hoping to avoid that at all possible costs. If the test will be useful to us, I'll do it.
Another test I can have if my HMO offers it is a whole body scan. I would take a lower dose of radiation and then they'd do a scan of my whole body. Papillary carcinoma/thyroid cells uptake radiation so anything that lights up is a problem, basically - the hope is that nothing does. I don't actually know if this test is an option for me so it's something I need to ask about.
I know we're just taking it step by step, I know that I'm not being 'tested for cancer' except that I am, again. I can still hope that everything is fine, but I know this road and it's still fraught with switchbacks and rockslides and I can't help but be nervous.
Just hanging on, hanging in there.
Friday, August 30, 2013
Cancer test
Part of my one year treatment plan is this thyrogloblin stimulating injection. It's two injections, one each day for two days, and then a blood draw within 5 days. From this link, apparently this test will tell me if I have cancer.
Handy. And a little scary.
Handy. And a little scary.
1-year Endo appointment
Well, I met the 'new' endocrinologist. Turns out she's on a contract and may not renew, so that sucks, because she's pretty darn cool.
So here's the scoop, friends. My lymph nodes are swollen and she thinks I need an ultrasound to look at my neck again.
For some reason, I thought I'd have to go in and fight and convince, and when she touched my neck she made a face and started 'thinking' (as in, making a face of deep thought lol) which surprised me. I figured that whoever I saw would chalk it up to "you're fighting something off and don't know what it is yet", and that I'd have to really plead for an ultrasound. Turns out she was concerned enough on her own to just think it's a good idea.
Which, you know, scares me even more. The right lymph node under my jaw has been swollen for a couple of weeks now and not painful to the touch necessarily, but feels 'pinchy' a lot like it did before I had my thyroid removed. The last three days there is a lymph node in the right side of my neck, behind my ear (I don't know how better to describe it) that is swollen and painful, to the point that sometimes it hurts when I turn my head. Today, feeling good, hopefully it stays that way.
So these things are concerning. She didn't feel any masses but they didn't feel the 1.1cm mass in my thyroid when it was in there, either, so that doesn't mean much. We're going to alter my medication and do bloodwork in 6 weeks, I'll have an ultrasound sometime in the next couple of weeks and hopefully by the end of hte month we'll know enough to either relax and be grateful, or develop a new plan.
So that's that.
How am I feeling? I think for a few hours I felt very reflective and a little sad, a little taken aback by the whole thing, honestly. I thought the pain my lymph nodes would prove to be 'all in my head' and I'd feel like a dork but have nothing to worry about. Here I am, not feeling like a dork and still hoping I have nothing to worry about but not quite convinced anymore that that is true.
If you're reading this, you'll know what's up. I'm not posting it, I'm not really telling anyone other than my few peeps, and I'm pretty much just trying to let this slide into the back of my mind as much as possible. It doesn't mean you can't talk to me about it, it just means I'm not posting this on FB or anything until there are definitive things to say. Right now it's just feelings and speculation.
Onward we go.
So here's the scoop, friends. My lymph nodes are swollen and she thinks I need an ultrasound to look at my neck again.
For some reason, I thought I'd have to go in and fight and convince, and when she touched my neck she made a face and started 'thinking' (as in, making a face of deep thought lol) which surprised me. I figured that whoever I saw would chalk it up to "you're fighting something off and don't know what it is yet", and that I'd have to really plead for an ultrasound. Turns out she was concerned enough on her own to just think it's a good idea.
Which, you know, scares me even more. The right lymph node under my jaw has been swollen for a couple of weeks now and not painful to the touch necessarily, but feels 'pinchy' a lot like it did before I had my thyroid removed. The last three days there is a lymph node in the right side of my neck, behind my ear (I don't know how better to describe it) that is swollen and painful, to the point that sometimes it hurts when I turn my head. Today, feeling good, hopefully it stays that way.
So these things are concerning. She didn't feel any masses but they didn't feel the 1.1cm mass in my thyroid when it was in there, either, so that doesn't mean much. We're going to alter my medication and do bloodwork in 6 weeks, I'll have an ultrasound sometime in the next couple of weeks and hopefully by the end of hte month we'll know enough to either relax and be grateful, or develop a new plan.
So that's that.
How am I feeling? I think for a few hours I felt very reflective and a little sad, a little taken aback by the whole thing, honestly. I thought the pain my lymph nodes would prove to be 'all in my head' and I'd feel like a dork but have nothing to worry about. Here I am, not feeling like a dork and still hoping I have nothing to worry about but not quite convinced anymore that that is true.
If you're reading this, you'll know what's up. I'm not posting it, I'm not really telling anyone other than my few peeps, and I'm pretty much just trying to let this slide into the back of my mind as much as possible. It doesn't mean you can't talk to me about it, it just means I'm not posting this on FB or anything until there are definitive things to say. Right now it's just feelings and speculation.
Onward we go.
Monday, August 26, 2013
Turning to trees
When I go to births, I pray that I will be a tree. On the drive to the birth when my adrenaline runs high (what if I don't make it? What if something dreadful happens? What if it's a loooong birth? Did I forget anything? So excited!!!) I pray to be a tree to help ground myself. I pray that my roots will deeply tap into the earth, to the Source of All that Is and that I will have the energy I need to tend this family. I pray that my trunk will be strong but flex in the winds that will come our way, changing things, but allow me to hold them up as they make decisions they may not have anticipated having to make. I pray that my branches will reach out far and wide, so that my vision is broad and that I can see all possibilities.
This brings me comfort and helps me connect with the work I do, to stay compassionately detached from the family so that they can have their journey and not a recreation of mine in some backward 'healing' of my own wounds.
When I was having the biopsies last year, I closed my eyes, not allowed to swallow or talk as needles were pushed into my neck, I prayed to feel the bark enclose all around me, protecting me from fear and from anxiety, from the stress of holding very still while something that hurt happened to me.
I went to the Redwoods (the Holy Church of Trees) after my cancer treatment and I slept among the Old Ones. Great anxiety arose in me, I developed my first ever panic attack- my body moving giant energy up and out all at once. It felt like an emotional vomit. It set me off course a bit, made me feel vulnerable, but revealed, and open too. I created an altar on one of the trees in our campsite that had been cut down in just such a way as to create the perfect place for me to hold that space. I walked among the big trees and laid flowers at their bases, in gratitude.
I don't know why the trees talk to me, but they do. I don't mean with mouths and voices, but my heart stills and wisdom comes through when I walk in the trees. The Redwood forest is a home for me, but one so intense that I can't stay for too long, or go too far without returning. I feel the call right now, so intensely that when we went down to Oregon it was even physical, the urge to continue driving south to touch the trees, my family. Steadfast, wise, and breathing, only ever needing to be what they are and nothing more, supplying food and air and homes to beings of all kinds just by growing.
It's what we all do for each other, only we think we need to teach others the right way to be. All we ever have to do is be true to ourselves, and in so doing, we teach others - we create opportunities for other people to learn of themselves, and to teach us in return.
Right now, I go back to being a tree, of just being- breathing, being Kristina, speaking the truth as I know it, and being in that space of Nothing Else But This. I'm heading in to my endocrinology appointment and I'm not nervous per se, I feel pretty relaxed in general. That old feeling in my lymph nodes is back though, the one I had after my infection, and before I found out about having cancer. I don't think about cancer until this feeling pops up and then I think, "Am I creating this feeling?"
I worry more that it's all in my head than I worry that it's not. I do not want to manifest that kind of stress in myself, and I am open to all possibilities, so while I'd rather not have cancer again thankyouverymuch, I know it's not the end of the world if I do. I know it's okay. I know I have support.
So I don't know that I'm as 'anxious' about it, anxious enough to create these symptoms that do cause me concern- and I go back and forth wondreing if I should be concerned or just let it go and get the information I need? What if I worry people for nothing, what if I tie people up for no reason in my story and waste their time? Best I keep silent until I know more.
Even when I found out I had cancer, it was hard for me to tell people. I felt like I was bothering them, dropping bad news like this. There's no simple way to do it, and there are no 'rules' that tell you when to drop news, or when to keep it to yourself. I figured people would rather find out from me than someone else.
So now as I approach this appointment, I cling to the trees- but instead of becoming a tree, I am wrapped around it in a giant surrender - to let myself be held up this time, so that whatever is coming, I can put the tree to my back and face it. So either I'm crazy, or something's wrong, and I guess either scenario, I'll work it out.
This brings me comfort and helps me connect with the work I do, to stay compassionately detached from the family so that they can have their journey and not a recreation of mine in some backward 'healing' of my own wounds.
When I was having the biopsies last year, I closed my eyes, not allowed to swallow or talk as needles were pushed into my neck, I prayed to feel the bark enclose all around me, protecting me from fear and from anxiety, from the stress of holding very still while something that hurt happened to me.
I went to the Redwoods (the Holy Church of Trees) after my cancer treatment and I slept among the Old Ones. Great anxiety arose in me, I developed my first ever panic attack- my body moving giant energy up and out all at once. It felt like an emotional vomit. It set me off course a bit, made me feel vulnerable, but revealed, and open too. I created an altar on one of the trees in our campsite that had been cut down in just such a way as to create the perfect place for me to hold that space. I walked among the big trees and laid flowers at their bases, in gratitude.
I don't know why the trees talk to me, but they do. I don't mean with mouths and voices, but my heart stills and wisdom comes through when I walk in the trees. The Redwood forest is a home for me, but one so intense that I can't stay for too long, or go too far without returning. I feel the call right now, so intensely that when we went down to Oregon it was even physical, the urge to continue driving south to touch the trees, my family. Steadfast, wise, and breathing, only ever needing to be what they are and nothing more, supplying food and air and homes to beings of all kinds just by growing.
It's what we all do for each other, only we think we need to teach others the right way to be. All we ever have to do is be true to ourselves, and in so doing, we teach others - we create opportunities for other people to learn of themselves, and to teach us in return.
Right now, I go back to being a tree, of just being- breathing, being Kristina, speaking the truth as I know it, and being in that space of Nothing Else But This. I'm heading in to my endocrinology appointment and I'm not nervous per se, I feel pretty relaxed in general. That old feeling in my lymph nodes is back though, the one I had after my infection, and before I found out about having cancer. I don't think about cancer until this feeling pops up and then I think, "Am I creating this feeling?"
I worry more that it's all in my head than I worry that it's not. I do not want to manifest that kind of stress in myself, and I am open to all possibilities, so while I'd rather not have cancer again thankyouverymuch, I know it's not the end of the world if I do. I know it's okay. I know I have support.
So I don't know that I'm as 'anxious' about it, anxious enough to create these symptoms that do cause me concern- and I go back and forth wondreing if I should be concerned or just let it go and get the information I need? What if I worry people for nothing, what if I tie people up for no reason in my story and waste their time? Best I keep silent until I know more.
Even when I found out I had cancer, it was hard for me to tell people. I felt like I was bothering them, dropping bad news like this. There's no simple way to do it, and there are no 'rules' that tell you when to drop news, or when to keep it to yourself. I figured people would rather find out from me than someone else.
So now as I approach this appointment, I cling to the trees- but instead of becoming a tree, I am wrapped around it in a giant surrender - to let myself be held up this time, so that whatever is coming, I can put the tree to my back and face it. So either I'm crazy, or something's wrong, and I guess either scenario, I'll work it out.
Monday, August 19, 2013
Cancer days
Life putzes on, new joys, new stresses, adjusting to old joys and stresses- the days happen around you no matter what is going on in your life. Which is great- it's the dynamic force of change that keeps us from becoming moldy before it's time.
The cancer dance, just when you think it's over... not quite. It's not always that cancer has come back physically, but sometimes it comes back energetically. Sometimes you're thrown right back into that wacky fear that makes you a little neurotic and needy. I'm kind of there right now.
I can hear about cancer any time and while a teeny portion of me goes back to my own experience, I don't get terribly triggered by the day-to-day mention of it. Like anyone, sometimes I get a little emotional but really I feel the experience is fairly integrated.
Recently I discovered that a friend of mine has had cancer return. It made me so angry to hear it, and then it absolutely terrified me. I learned this just a few days ago and in a way I am adjusting, and still reeling- we are capable of feeling so many things at once, it's marvelous sometimes. I spent the evening in the bath tub with a drink, pondering how safe I have felt on the 'other side' of cancer. In my head, I know that it can come back. In my daily life however, I'm on the other side, never to return. This was a sharp detour sign not meant for me, but that reminded me that there could be curves ahead and not to get too comfortable at the wheel.
I was surprised and immediately buckled when I woke up on Saturday morning feeling a familiar sensation - the lymph node under my right jaw was swollen and felt like it was infected. It's not the same feeling as when you are sick and your lymph nodes get swollen. Energetically it feels like.. illness. I don't know how to describe it. It's a sharper, yellow sensation that is very distinct (I know, you're asking, yellow? Just go with it.) I could feel the node on my left side flaring a bit too and I immediately thought, Oh shit. It's back.
After I'd found out I had a lump in my thyroid and before my biopsies, I had a lymph node under my jaw become infected. Full on high fever, antibiotics, the whole shebang. I didn't even know lymph nodes could get infected, but this was very obviously the case. Dr. Googe said, "If there is cancer nearby..." so it gave me a chance to consider that maybe I had cancer and my body was giving me the heads-up, so to speak, before I got the diagnosis. It was helpful to get to try it on but it scared the living shit out of me too, because there was so much still I didn't know. Don't know why I had an infection, but I did have cancer, so in my mind, the two are irrevocably connected.
Saturday morning, waking up with this sensation, it shook me. It has still left me shaken, I don't know where to catalog things that were around cancer- Before Cancer, and After Cancer, and Signs of Cancer. I'm sure there are other buckets to plop things into, those are just the ones I'm working with right now. On the heels of the giant detour sign I drove past in my friend's experience, I wasn't exactly on watch but this particular 'sign' was too large to ignore. It cut past my defenses, my cognitive dissonance.
I had to do henna all day at a festival and my lymph nodes were hurting off and on all day. Late in the afternoon, a delicate soul walked into my booth, with her new hair painted pink on her head and eyebrows. Bright pink. Her spirit was so very fragile, she was recently on the other side of a second bout with cancer, her second bout with chemotherapy, and her hair was just starting to come back. She wasn't strong yet, but she would be, she will be.. she's still very delicate. Her friend accompanying her sat her with me and left while we worked out what she wanted done. She wanted flowers on her face. She said she'd freaked out her husband by dying her new hair pink and she really wanted to get him by having henna on her face. We chatted briefly and she shared bullet points of her story. She sat with me for maybe five minutes, but we got to talk a little about a cancer retreat where she could go with her husband and be tended and fed for a while.
Her friend returned to pay me and asked me what I required, I said, "It's on me, my pleasure." It was such a small amount of work and my heart was cracked open so deliciously just meeting her- I truly had already been amply compensated. He took money out of his wallet and paused, and said, "Wait a second.." He pulled a larger bill out and put it in my tip jar and looked me right in the eye very intentionally and said, "That's for you. Thank you." And they walked away.
Even writing that little story, it makes me cry. I don't know why. I was gifted so beautifully just by her being her, and me being me, that the money on top felt so generous and made me feel seen and appreciated. Still, what I am stuck with is that two people who walked a similar journey, granted, hers far more challenging than mine, we touched each other for that moment.
I kept hearing the word cancer all day for some reason, and it was triggering me deeply. It felt like a billboard from the Universe. I went to bed that night and had weird dreams. I developed a little fever, which broke in the morning. I felt better. A little shaken still, vulnerable, but more steady.
Sunday a dear friend of mine was visiting from out of town and we were walking in the park when I ran into my Sistah, Leah. Leah had leukemia and found out right after I did that she had cancer, so we've been pillars of laughs and frank honesty for each other over the last year. Whenever we run into each other (and we do, OFTEN), one of us cries. This time it was my turn, and honestly, it scared me again to have this new reminder of CANCER! screaming me in the face. Our bond is because of cancer. We went to high school together and have common friends, but cancer was what really brought us closer, into a no-maintenance-high-appreciation friendship. Seeing her fills my heart and breaks it at the same time, I'm sure that it goes both ways.
Leah and I parted and Erin and I continued to walk through the park and she looked at me and said, "Are you going to call your doctor?" I'd tossed it around a bit but it just seemed very bold-faced-in-your-face-font which was great, it allowed me to just address the question without all the feelings of not wanting to be a pain in the ass.
I have an appointment coming up, my lymph node isn't bothering me as much but it is still bothering me, so I'm going to just get a little peace of mind and ask for my ultrasound six months early. It's a new doc so we'll see what she says. I hate to think I'm setting the stage that I'm high maintenance right out of the gate, and at the same time, I'm paying for this, and I had cancer, and it's okay if I'm high maintenance, damnit.
Hopefully there is no follow up needed. :)
The cancer dance, just when you think it's over... not quite. It's not always that cancer has come back physically, but sometimes it comes back energetically. Sometimes you're thrown right back into that wacky fear that makes you a little neurotic and needy. I'm kind of there right now.
I can hear about cancer any time and while a teeny portion of me goes back to my own experience, I don't get terribly triggered by the day-to-day mention of it. Like anyone, sometimes I get a little emotional but really I feel the experience is fairly integrated.
Recently I discovered that a friend of mine has had cancer return. It made me so angry to hear it, and then it absolutely terrified me. I learned this just a few days ago and in a way I am adjusting, and still reeling- we are capable of feeling so many things at once, it's marvelous sometimes. I spent the evening in the bath tub with a drink, pondering how safe I have felt on the 'other side' of cancer. In my head, I know that it can come back. In my daily life however, I'm on the other side, never to return. This was a sharp detour sign not meant for me, but that reminded me that there could be curves ahead and not to get too comfortable at the wheel.
I was surprised and immediately buckled when I woke up on Saturday morning feeling a familiar sensation - the lymph node under my right jaw was swollen and felt like it was infected. It's not the same feeling as when you are sick and your lymph nodes get swollen. Energetically it feels like.. illness. I don't know how to describe it. It's a sharper, yellow sensation that is very distinct (I know, you're asking, yellow? Just go with it.) I could feel the node on my left side flaring a bit too and I immediately thought, Oh shit. It's back.
After I'd found out I had a lump in my thyroid and before my biopsies, I had a lymph node under my jaw become infected. Full on high fever, antibiotics, the whole shebang. I didn't even know lymph nodes could get infected, but this was very obviously the case. Dr. Googe said, "If there is cancer nearby..." so it gave me a chance to consider that maybe I had cancer and my body was giving me the heads-up, so to speak, before I got the diagnosis. It was helpful to get to try it on but it scared the living shit out of me too, because there was so much still I didn't know. Don't know why I had an infection, but I did have cancer, so in my mind, the two are irrevocably connected.
Saturday morning, waking up with this sensation, it shook me. It has still left me shaken, I don't know where to catalog things that were around cancer- Before Cancer, and After Cancer, and Signs of Cancer. I'm sure there are other buckets to plop things into, those are just the ones I'm working with right now. On the heels of the giant detour sign I drove past in my friend's experience, I wasn't exactly on watch but this particular 'sign' was too large to ignore. It cut past my defenses, my cognitive dissonance.
I had to do henna all day at a festival and my lymph nodes were hurting off and on all day. Late in the afternoon, a delicate soul walked into my booth, with her new hair painted pink on her head and eyebrows. Bright pink. Her spirit was so very fragile, she was recently on the other side of a second bout with cancer, her second bout with chemotherapy, and her hair was just starting to come back. She wasn't strong yet, but she would be, she will be.. she's still very delicate. Her friend accompanying her sat her with me and left while we worked out what she wanted done. She wanted flowers on her face. She said she'd freaked out her husband by dying her new hair pink and she really wanted to get him by having henna on her face. We chatted briefly and she shared bullet points of her story. She sat with me for maybe five minutes, but we got to talk a little about a cancer retreat where she could go with her husband and be tended and fed for a while.
Her friend returned to pay me and asked me what I required, I said, "It's on me, my pleasure." It was such a small amount of work and my heart was cracked open so deliciously just meeting her- I truly had already been amply compensated. He took money out of his wallet and paused, and said, "Wait a second.." He pulled a larger bill out and put it in my tip jar and looked me right in the eye very intentionally and said, "That's for you. Thank you." And they walked away.
Even writing that little story, it makes me cry. I don't know why. I was gifted so beautifully just by her being her, and me being me, that the money on top felt so generous and made me feel seen and appreciated. Still, what I am stuck with is that two people who walked a similar journey, granted, hers far more challenging than mine, we touched each other for that moment.
I kept hearing the word cancer all day for some reason, and it was triggering me deeply. It felt like a billboard from the Universe. I went to bed that night and had weird dreams. I developed a little fever, which broke in the morning. I felt better. A little shaken still, vulnerable, but more steady.
Sunday a dear friend of mine was visiting from out of town and we were walking in the park when I ran into my Sistah, Leah. Leah had leukemia and found out right after I did that she had cancer, so we've been pillars of laughs and frank honesty for each other over the last year. Whenever we run into each other (and we do, OFTEN), one of us cries. This time it was my turn, and honestly, it scared me again to have this new reminder of CANCER! screaming me in the face. Our bond is because of cancer. We went to high school together and have common friends, but cancer was what really brought us closer, into a no-maintenance-high-appreciation friendship. Seeing her fills my heart and breaks it at the same time, I'm sure that it goes both ways.
Leah and I parted and Erin and I continued to walk through the park and she looked at me and said, "Are you going to call your doctor?" I'd tossed it around a bit but it just seemed very bold-faced-in-your-face-font which was great, it allowed me to just address the question without all the feelings of not wanting to be a pain in the ass.
I have an appointment coming up, my lymph node isn't bothering me as much but it is still bothering me, so I'm going to just get a little peace of mind and ask for my ultrasound six months early. It's a new doc so we'll see what she says. I hate to think I'm setting the stage that I'm high maintenance right out of the gate, and at the same time, I'm paying for this, and I had cancer, and it's okay if I'm high maintenance, damnit.
Hopefully there is no follow up needed. :)
Monday, June 3, 2013
Unrecognizable
I know I only really write when I'm stressed, and I don't want to give the impression that I'm always in some negative place- I'm not. Writing helps me process and unload and unfortunately if you're an audience here you get a birds eye view of mostly my hard, raw moments.
Have you ever woken up and parts of yourself that you'd carefully cultivated were suddenly no longer a part of your personality? That you were capable of saying and doing things that the day before (and the many days before that) you'd never have imagined? Imagine things flying out of your mouth before your brain can catch up and warn you against it, before the exhale comes, giving you a chance to think about it, to reframe, to be clear and succinct, or to not speak at all. Imagine going from being soft and yielding, to having fuzzy boundaries and being overly accommodating of other people and their need to process and work through, even if it means you set yourself aside - to someone sharp and full of edges that are sharp and blistering at the same time, who doesn't look back and say, "I wish I hadn't said that," but rather thinks, "I guess they'll let me know if I hurt them."
This is me. I hate it.
And I love it.
And I hate it. It's embarrassing. It feels cruel.
And liberating.
It feels cold and too far off the edge of who I know myself to be.
And I let go of the things that don't serve me, and it makes me harder.
I don't want to be harder, I don't want to be so harsh.
At the same time, I am liberated by it, that I speak the truth without pausing to give myself permission. That I don't pause because the truth might hurt, but rather trust that if it hurts, we'll work it out.
I don't need permission to feel the things I feel, there is no permission needed EVER to feel. You just feel, or you don't. No one has the right to give you permission to feel what you feel. No one.
I sometimes think I am no longer fit for public. I often want to retreat deep into the woods, into a place of solitude, to regenerate my broken heart, to discover myself again because I am a stranger now, to learn where my edges are instead of constantly cutting myself on them. To learn to remember what gratitude felt like, what unconditional love felt like - because now what I feel most is intolerance, impatience, rage, apathy and an absolute unwillingness to make it more comfortable for YOU.
I feel bad for the hard things I say, for only a second, I feel bad, and there is no filter there any more. Whatever it was that stole the soft, understanding, compassionate parts of me that knew how to talk about feelings, knew how to address hard issues with grace and tact - whatever lifted those qualities from me, lifted my filters as well.
I am completely uncomfortable in this skin and I am literally incapable of being another way right now. 100% unable to shift it. There is no where to be but here. If I could change it, I would. Maybe someday I can, but for now, I just want to be able to look at myself in the mirror, emotionally and spiritually, and be someone that I recognize. So far, I am still very much a stranger to myself.
Have you ever woken up and parts of yourself that you'd carefully cultivated were suddenly no longer a part of your personality? That you were capable of saying and doing things that the day before (and the many days before that) you'd never have imagined? Imagine things flying out of your mouth before your brain can catch up and warn you against it, before the exhale comes, giving you a chance to think about it, to reframe, to be clear and succinct, or to not speak at all. Imagine going from being soft and yielding, to having fuzzy boundaries and being overly accommodating of other people and their need to process and work through, even if it means you set yourself aside - to someone sharp and full of edges that are sharp and blistering at the same time, who doesn't look back and say, "I wish I hadn't said that," but rather thinks, "I guess they'll let me know if I hurt them."
This is me. I hate it.
And I love it.
And I hate it. It's embarrassing. It feels cruel.
And liberating.
It feels cold and too far off the edge of who I know myself to be.
And I let go of the things that don't serve me, and it makes me harder.
I don't want to be harder, I don't want to be so harsh.
At the same time, I am liberated by it, that I speak the truth without pausing to give myself permission. That I don't pause because the truth might hurt, but rather trust that if it hurts, we'll work it out.
I don't need permission to feel the things I feel, there is no permission needed EVER to feel. You just feel, or you don't. No one has the right to give you permission to feel what you feel. No one.
I sometimes think I am no longer fit for public. I often want to retreat deep into the woods, into a place of solitude, to regenerate my broken heart, to discover myself again because I am a stranger now, to learn where my edges are instead of constantly cutting myself on them. To learn to remember what gratitude felt like, what unconditional love felt like - because now what I feel most is intolerance, impatience, rage, apathy and an absolute unwillingness to make it more comfortable for YOU.
I feel bad for the hard things I say, for only a second, I feel bad, and there is no filter there any more. Whatever it was that stole the soft, understanding, compassionate parts of me that knew how to talk about feelings, knew how to address hard issues with grace and tact - whatever lifted those qualities from me, lifted my filters as well.
I am completely uncomfortable in this skin and I am literally incapable of being another way right now. 100% unable to shift it. There is no where to be but here. If I could change it, I would. Maybe someday I can, but for now, I just want to be able to look at myself in the mirror, emotionally and spiritually, and be someone that I recognize. So far, I am still very much a stranger to myself.
Wednesday, May 22, 2013
One year later
An hour ago I was thinking about how my 'cancerversary' is coming up - the anniversary of the moment when I found out I had thyroid cancer. I was trying to figure out how many days away it was, so that I could think about whether I wanted to mark the day in some way, to sort of assess my feelings.
I realized with a start that it's tomorrow.
Ever since a year ago, I do this. I know some emotional date is coming and in my head, it is far away. When I think about it, starting to wrap my mind around it, I realize that it's tomorrow and I feel terribly cheated in my chance to prepare, wrap my mind around it, think about what it all means. I'm an analyzer, it's what I do.
So one year ago today, I was hovering between the worlds of biopsy and results, knowing I wouldn't have them until tomorrow, a quiet unknowing in my heart. Looking back does not feel like a wistful celebration, it feels dense and bitter in many ways.
"Ever since you've had cancer, you've changed. You're more harsh than you used to be, there's an edge to you now." A friend said this to me not long after my surgery, and it has proven increasingly true over the last year. I was really angry when she said it, I can't say I'm not still angry sometimes, but mostly because it's true. Also, because life changes us, and not always in ways we like. I am harsher, and I spend a lot less time now crafting what I hope are the perfectly tended words to get my points across. I'm not as delicate in my language, I don't tiptoe gently behind someone's defenses to be heard.
Conversely, I have a whole new vocabulary for what it means to go through, survive, and be reborn by a trauma. This is not a bad or sad thing- life is full of traumas and we discover who we are, who we are capable of becoming, in the face of them. We are swept off our feet by the flash floods of life and must find new ground, testing for stability, trusting our hand holds. It's hard work, and it requires us to stay in the moment in order to survive.
I found out that I was capable of facing down cancer but not in a fight, but in a dance. I never would have imagined it until I was in the moment! All my pre-cancer life, I imagined that cancer was a fight, a battle, a war - you win, you lose, you conquer or surrender. I discovered that cancer could be a gift, a great expansion of ones-self. I found a great, deep intimacy with a friend who also had cancer- something that people who haven't had a serious illness can ever truly understand, because their bodies were not assaulted by the word Cancer, and by cancer treatment, and by the emotional battery of it all. It is a private, exquisite experience that defies words, and it broke open my ability to feel compassion greatly.
I've learned that it feels really weird, almost selfish and embarrassing, to announce that you have cancer on Facebook, even after all those important calls are made. I learned there's no easy way to tell people who love you that you have cancer, and that I still couldn't help but be the 'strong' one in that moment. I laughed, I joked, I tried to put people at ease, and days later I lost my shit driving down the highway and almost drove myself to the crazy hospital because I thought I was going insane. It passed. I was going insane, but not the quick kind of crazy people want to give you meds for- the slow kind that everyone else is suffering, too.
I learned that a lot more can forge a marriage together than fights that are behind you, adventures you've had together, parenting children into hopefully healthy adulthoods- and that not all of the crises of cancer needed discussion. Sometimes I just needed to look at his face and know that absolutely no matter what, he was there for me, that he would witness and hold, and encourage and be the space where I could fall apart, and never ask a single thing for himself, even when I begged for him to. I saw a strength in my husband I had seen glimpses of over our 20+ year friendship, but this took us to a place of revelation I don't know that much else could have accomplished. He is truly the best man I have ever known, in ways that words can never capture. I limit him when I try.
I learned that I can love myself a lot, and still not like parts of myself that grow like weeds in the garden I thought I'd so carefully cultivated. Tenacious things, I pull at these parts of myself and they come back thicker and deeper until I relent, and make room for them. It's a hard lesson, to accept things about yourself that are not who you knew yourself to be. "I see that you love yourself, but that you don't like parts of yourself. I see that." Another friend reflected to me recently after I raged about my new impatience with things, my intolerance for 'bullshit'. I don't want to accomodate little things anymore, I don't want to do the dances I once was so fluent in. I don't want to baby a situation. I make harsh faces now, where I used to be softer. I don't want to be touched like I once did. I feel more masculine in many ways.
I was at ComiCon this year and met this amazing artist. Looking through his work I felt things, and I came across this one. I don't love this painting, it doesn't necessarily appeal to my eye. However, if my heart was cut out and flayed open, this is what it would look like. The person is flipping off the butterflies, the empathy - for the sake of peace, the shadow ahead saying, "FUCK YOU". I get it. I truly get it. I bought it and it sits right in front of me now, where I can look at it often and ask myself, "Am I still there?" Yes, I am. I don't have time for empathy anymore, I need serenity, I can't take care of you, because I have to take care of me. I have to let go, I'll be there when you fall but I won't be your cushion anymore.
It's a weird, strange, powerful, dark, masculine, wonderful, liberating place to be.
"What does the anniversary mean to you? Why do you mark it?" I really had to think about it when my friend asked me this recently, when I told her that May 23rd was coming, and that I was feeling tender and easily bruised. She was curious, not judging, and I had no answer.
I realized today as I made my bed and tried not to cry that the anniversary marks that I have lived for 365 days past an event. I grew up thinking I wouldn't grow up- I have had an entire adulthood never imagining growing old, anticipating that I would die at any moment, rather than that I would live a long time. I still don't think forward from now. Rather, I take a curiosity stance- I wonder if I'll see that baby born? I wonder if I'll actually get into midwifery school? I wonder if I'll actually see the ribbon cutting of this business I'm in? I wonder if I'll see my oldest graduate, or my youngest get married? I don't know. I don't assume so. I just hope for it, and wait to see what happens in between.
How does any one event change you? It's impossible to know, because it happens immediately AND over time- it touches every event in your life directly following it, and those change you too, so you can't possibly tease out what one thing caused, versus another. I try to unravel who I was before I had cancer, before my mother died, and I find myself shocked that as I think about facing tomorrow, I am wishing my mother was alive so that we could talk about it. I have not felt that since her death. I don't want her to be alive, but I wish that of all people, I could visit this milestone in my life with the woman who brought me forth - learn how it touched her, too.
The last thing I'll say is that my cancer gave me the gift of anger. I used to say that if I ever let myself feel the full spectrum of anger that I had tidied into little boxes in my self-awareness-defense-mechanism, that someone would literally extinguish from the earth. I'm pretty sure that on the other side of cancer, I began to feel the anger- not that I had cancer, but just at the helplessness, at the painful experiences, at the fear in the eyes of people I loved, at the minimization of my experience as 'just' thyroid cancer, at the desire to make it bigger than it really was because it felt enormous to me, even if the world said it was small. Small cracks began to appear and vents formed- I started speaking honestly about feeling angry and stopped feeling that I needed to apologize for it. Rather, I just stopped giving a flying fuck what anyone thought about my feelings because damnit, they were mine, and i had a right to them, and I earned them, and therefore protected and defended them. I don't have to explain to anyone what cancer meant to me, I don't have to dial it back or feel less intensely because it made other people uncomfortable. That was an incredibly powerful discovery - that I can feel the full range of emotions, stretch into the full skin of who I am, and that no one would leave me, no one would cease to exist in the way I had always thought.
In some ways I am still in between the worlds, still grieving the loss and death of who I was Before Cancer. There are things I know now that cost me, but many things I've learned that I waited a life time to know. You can't have one without the other, and that's one of the more profound lessons, I think.
I realized with a start that it's tomorrow.
Ever since a year ago, I do this. I know some emotional date is coming and in my head, it is far away. When I think about it, starting to wrap my mind around it, I realize that it's tomorrow and I feel terribly cheated in my chance to prepare, wrap my mind around it, think about what it all means. I'm an analyzer, it's what I do.
So one year ago today, I was hovering between the worlds of biopsy and results, knowing I wouldn't have them until tomorrow, a quiet unknowing in my heart. Looking back does not feel like a wistful celebration, it feels dense and bitter in many ways.
"Ever since you've had cancer, you've changed. You're more harsh than you used to be, there's an edge to you now." A friend said this to me not long after my surgery, and it has proven increasingly true over the last year. I was really angry when she said it, I can't say I'm not still angry sometimes, but mostly because it's true. Also, because life changes us, and not always in ways we like. I am harsher, and I spend a lot less time now crafting what I hope are the perfectly tended words to get my points across. I'm not as delicate in my language, I don't tiptoe gently behind someone's defenses to be heard.
Conversely, I have a whole new vocabulary for what it means to go through, survive, and be reborn by a trauma. This is not a bad or sad thing- life is full of traumas and we discover who we are, who we are capable of becoming, in the face of them. We are swept off our feet by the flash floods of life and must find new ground, testing for stability, trusting our hand holds. It's hard work, and it requires us to stay in the moment in order to survive.
I found out that I was capable of facing down cancer but not in a fight, but in a dance. I never would have imagined it until I was in the moment! All my pre-cancer life, I imagined that cancer was a fight, a battle, a war - you win, you lose, you conquer or surrender. I discovered that cancer could be a gift, a great expansion of ones-self. I found a great, deep intimacy with a friend who also had cancer- something that people who haven't had a serious illness can ever truly understand, because their bodies were not assaulted by the word Cancer, and by cancer treatment, and by the emotional battery of it all. It is a private, exquisite experience that defies words, and it broke open my ability to feel compassion greatly.
I've learned that it feels really weird, almost selfish and embarrassing, to announce that you have cancer on Facebook, even after all those important calls are made. I learned there's no easy way to tell people who love you that you have cancer, and that I still couldn't help but be the 'strong' one in that moment. I laughed, I joked, I tried to put people at ease, and days later I lost my shit driving down the highway and almost drove myself to the crazy hospital because I thought I was going insane. It passed. I was going insane, but not the quick kind of crazy people want to give you meds for- the slow kind that everyone else is suffering, too.
I learned that a lot more can forge a marriage together than fights that are behind you, adventures you've had together, parenting children into hopefully healthy adulthoods- and that not all of the crises of cancer needed discussion. Sometimes I just needed to look at his face and know that absolutely no matter what, he was there for me, that he would witness and hold, and encourage and be the space where I could fall apart, and never ask a single thing for himself, even when I begged for him to. I saw a strength in my husband I had seen glimpses of over our 20+ year friendship, but this took us to a place of revelation I don't know that much else could have accomplished. He is truly the best man I have ever known, in ways that words can never capture. I limit him when I try.
I learned that I can love myself a lot, and still not like parts of myself that grow like weeds in the garden I thought I'd so carefully cultivated. Tenacious things, I pull at these parts of myself and they come back thicker and deeper until I relent, and make room for them. It's a hard lesson, to accept things about yourself that are not who you knew yourself to be. "I see that you love yourself, but that you don't like parts of yourself. I see that." Another friend reflected to me recently after I raged about my new impatience with things, my intolerance for 'bullshit'. I don't want to accomodate little things anymore, I don't want to do the dances I once was so fluent in. I don't want to baby a situation. I make harsh faces now, where I used to be softer. I don't want to be touched like I once did. I feel more masculine in many ways.
 |
| Decline of Empathy to Appease Serenity, by Nigel Sade |
I was at ComiCon this year and met this amazing artist. Looking through his work I felt things, and I came across this one. I don't love this painting, it doesn't necessarily appeal to my eye. However, if my heart was cut out and flayed open, this is what it would look like. The person is flipping off the butterflies, the empathy - for the sake of peace, the shadow ahead saying, "FUCK YOU". I get it. I truly get it. I bought it and it sits right in front of me now, where I can look at it often and ask myself, "Am I still there?" Yes, I am. I don't have time for empathy anymore, I need serenity, I can't take care of you, because I have to take care of me. I have to let go, I'll be there when you fall but I won't be your cushion anymore.
It's a weird, strange, powerful, dark, masculine, wonderful, liberating place to be.
"What does the anniversary mean to you? Why do you mark it?" I really had to think about it when my friend asked me this recently, when I told her that May 23rd was coming, and that I was feeling tender and easily bruised. She was curious, not judging, and I had no answer.
I realized today as I made my bed and tried not to cry that the anniversary marks that I have lived for 365 days past an event. I grew up thinking I wouldn't grow up- I have had an entire adulthood never imagining growing old, anticipating that I would die at any moment, rather than that I would live a long time. I still don't think forward from now. Rather, I take a curiosity stance- I wonder if I'll see that baby born? I wonder if I'll actually get into midwifery school? I wonder if I'll actually see the ribbon cutting of this business I'm in? I wonder if I'll see my oldest graduate, or my youngest get married? I don't know. I don't assume so. I just hope for it, and wait to see what happens in between.
How does any one event change you? It's impossible to know, because it happens immediately AND over time- it touches every event in your life directly following it, and those change you too, so you can't possibly tease out what one thing caused, versus another. I try to unravel who I was before I had cancer, before my mother died, and I find myself shocked that as I think about facing tomorrow, I am wishing my mother was alive so that we could talk about it. I have not felt that since her death. I don't want her to be alive, but I wish that of all people, I could visit this milestone in my life with the woman who brought me forth - learn how it touched her, too.
The last thing I'll say is that my cancer gave me the gift of anger. I used to say that if I ever let myself feel the full spectrum of anger that I had tidied into little boxes in my self-awareness-defense-mechanism, that someone would literally extinguish from the earth. I'm pretty sure that on the other side of cancer, I began to feel the anger- not that I had cancer, but just at the helplessness, at the painful experiences, at the fear in the eyes of people I loved, at the minimization of my experience as 'just' thyroid cancer, at the desire to make it bigger than it really was because it felt enormous to me, even if the world said it was small. Small cracks began to appear and vents formed- I started speaking honestly about feeling angry and stopped feeling that I needed to apologize for it. Rather, I just stopped giving a flying fuck what anyone thought about my feelings because damnit, they were mine, and i had a right to them, and I earned them, and therefore protected and defended them. I don't have to explain to anyone what cancer meant to me, I don't have to dial it back or feel less intensely because it made other people uncomfortable. That was an incredibly powerful discovery - that I can feel the full range of emotions, stretch into the full skin of who I am, and that no one would leave me, no one would cease to exist in the way I had always thought.
In some ways I am still in between the worlds, still grieving the loss and death of who I was Before Cancer. There are things I know now that cost me, but many things I've learned that I waited a life time to know. You can't have one without the other, and that's one of the more profound lessons, I think.
Wednesday, May 1, 2013
How are you doing?
My Sister-in-healing, Leah, asks me how I'm doing. We keep running into each other around town and when I see her face, the way she stands with one shoulder down and both kind of rolled forward, the smile cracking across her face but not fully, it's like seeing myself in another body, another time, another cancer. We see each other and we both laugh because we always circle unknowingly around each other, we keep bumping into each other, and the timing is always just right.
"My cancer-versary is coming up." I am standing in the middle of the Olympic College student center and I start to cry, even though I never cry. Crying is hard, but somehow with Leah it never fails to be easy. "I don't know how I am."
It's so much more than just that I'm about to reach one year of knowing I had cancer, the day that this blog started unfolding, the day that I died right on the spot and have had to be reborn anew, over and over ever since. It's so much more than that.
I go back and forth between wondering if I'm broken, unfixable, if I'm different now from who I was and if I will ever know that girl again. She feels young and naive to me, the Before-Cancer-Kristina, and far away and in a way, fictional. Today I feel darker, grittier, like I am holding on with my teeth and swinging with my fists. Sometimes I feel like I am lost in the Underworld and will never find my way back out, and other times I revel that this is the new normal and that maybe this normal can be as delightful as the old one was.
These last few days, I feel that the layers of myself are being peeled back by an invisible hand. I spent the weekend with people for whom I care very much at the Oregon coast. The raw beach landscape covered with basalt, ancient lava flows that carve and shape the edge of the world. In a way I feel that this is a physical manifestation of me, something that will be strong enough to hold, but will cut you at the same time, with the never ending facelift the ocean provides so that I am always renewed, dead and reborn. There was a moment when I had about 45 minutes alone and I realized how taxed I'd felt, pouring out energy all weekend long. I realized how much I wanted to climb back into myself, into quiet and safety and retreat, and that startled me.
Ever since I notice how much less I want to talk, and how much less I want to be around the energy of others. I find myself turning inward like an introvert, a word I'd never dreamed would ever, ever be associated with me, and yet here it is. Groups tax me. Intimate interactions require a lot of me. My dream life is vivid and intense. I want to be in the woods with the quiet strength of the trees and I fear if I cry that someone might hear me and step in. I want to be able to say that I'm going crazy without someone saying, "Oh no, you are not crazy." I am crazy, which isn't a bad thing, but it's true.
I look around and I realize I do not know myself, I do not recognize this person who is more masculine, who angers easily, who grows irritated with people and situations for reasons I can't figure out no matter how hard I try, who doesn't over think nearly as much and figures that people will either get me or they won't, and that it's their job to pursue clarity, not mine to preemptively offer it. It's like I've been flipped inside out in a way.
Whenever I think about a situation in a new way, a post-2012 kind of way, it makes me angry for a while. Who is this person, this new Kristina? I still don't know. I still have familiar traits but I wonder what the people around me who have known me on either side of last year truly think about who I am now. Do they grieve who I was the way I do? Do I seem overly distracted with this? Do they think I'm being dramatic or silly or making a mountain out of a molehill? And do I fucking care? Actually.. not really.
As every day passes I am not actually thinking too much about May 23rd. Its sort of hovering around my tender edges. When I talk about things, I go instantly to the heart and I cry, right in the restaurants I'm sitting in. Today I talked about how I know I need to get help taking care of myself, because we aren't meant to take care of ourselves alone, and I started to cry because I don't know how to do anything but that. I don't know how to let other people in their skills care for me. I don't know how to lay on a table, vulnerable, and trust someone to touch my body in a healing way, to be in my space. It terrifies me and makes me feel like I will come apart at the seams, or disassociate, or break, and that it will be too much for me, and for them. I justify staying ill (in my head, in my body) because it's too scary to get well. It's scary to lose weight. It's scary to see my body change, to let go of the insulation that this body provides me from the emotions of others, and from being as big outside as I feel inside.
In a way I knew that if I ever felt the anger that was inside, if I ever let it out, someone would literally cease to exist, they would blink out of this life. The Universe could not hold my anger without a cost. That proved to be true, but in reverse- the life was taken and the the anger came, and I can't stop it. It has left me rough around my edges, people bump up against me and walk away bruised and cut sometimes, and I can be indifferent to that because in some way, this is life. It hurts. Maybe I am one of those things, where I never was before, that leaves a mark and challenges your coping skills, or maybe I am broken in half and you slide between my sharp edges. I don't know.
I just know that it still feels like it's awkward to talk about it all. It feels hard to reach out to someone who could actually probably really help me. It feels terrifying to think about healing, because it's a place I don't know and I'm just starting to get my bearings here.
How am I doing? I'm doing. That's all I know.
"My cancer-versary is coming up." I am standing in the middle of the Olympic College student center and I start to cry, even though I never cry. Crying is hard, but somehow with Leah it never fails to be easy. "I don't know how I am."
It's so much more than just that I'm about to reach one year of knowing I had cancer, the day that this blog started unfolding, the day that I died right on the spot and have had to be reborn anew, over and over ever since. It's so much more than that.
I go back and forth between wondering if I'm broken, unfixable, if I'm different now from who I was and if I will ever know that girl again. She feels young and naive to me, the Before-Cancer-Kristina, and far away and in a way, fictional. Today I feel darker, grittier, like I am holding on with my teeth and swinging with my fists. Sometimes I feel like I am lost in the Underworld and will never find my way back out, and other times I revel that this is the new normal and that maybe this normal can be as delightful as the old one was.
These last few days, I feel that the layers of myself are being peeled back by an invisible hand. I spent the weekend with people for whom I care very much at the Oregon coast. The raw beach landscape covered with basalt, ancient lava flows that carve and shape the edge of the world. In a way I feel that this is a physical manifestation of me, something that will be strong enough to hold, but will cut you at the same time, with the never ending facelift the ocean provides so that I am always renewed, dead and reborn. There was a moment when I had about 45 minutes alone and I realized how taxed I'd felt, pouring out energy all weekend long. I realized how much I wanted to climb back into myself, into quiet and safety and retreat, and that startled me.
Ever since I notice how much less I want to talk, and how much less I want to be around the energy of others. I find myself turning inward like an introvert, a word I'd never dreamed would ever, ever be associated with me, and yet here it is. Groups tax me. Intimate interactions require a lot of me. My dream life is vivid and intense. I want to be in the woods with the quiet strength of the trees and I fear if I cry that someone might hear me and step in. I want to be able to say that I'm going crazy without someone saying, "Oh no, you are not crazy." I am crazy, which isn't a bad thing, but it's true.
I look around and I realize I do not know myself, I do not recognize this person who is more masculine, who angers easily, who grows irritated with people and situations for reasons I can't figure out no matter how hard I try, who doesn't over think nearly as much and figures that people will either get me or they won't, and that it's their job to pursue clarity, not mine to preemptively offer it. It's like I've been flipped inside out in a way.
Whenever I think about a situation in a new way, a post-2012 kind of way, it makes me angry for a while. Who is this person, this new Kristina? I still don't know. I still have familiar traits but I wonder what the people around me who have known me on either side of last year truly think about who I am now. Do they grieve who I was the way I do? Do I seem overly distracted with this? Do they think I'm being dramatic or silly or making a mountain out of a molehill? And do I fucking care? Actually.. not really.
As every day passes I am not actually thinking too much about May 23rd. Its sort of hovering around my tender edges. When I talk about things, I go instantly to the heart and I cry, right in the restaurants I'm sitting in. Today I talked about how I know I need to get help taking care of myself, because we aren't meant to take care of ourselves alone, and I started to cry because I don't know how to do anything but that. I don't know how to let other people in their skills care for me. I don't know how to lay on a table, vulnerable, and trust someone to touch my body in a healing way, to be in my space. It terrifies me and makes me feel like I will come apart at the seams, or disassociate, or break, and that it will be too much for me, and for them. I justify staying ill (in my head, in my body) because it's too scary to get well. It's scary to lose weight. It's scary to see my body change, to let go of the insulation that this body provides me from the emotions of others, and from being as big outside as I feel inside.
In a way I knew that if I ever felt the anger that was inside, if I ever let it out, someone would literally cease to exist, they would blink out of this life. The Universe could not hold my anger without a cost. That proved to be true, but in reverse- the life was taken and the the anger came, and I can't stop it. It has left me rough around my edges, people bump up against me and walk away bruised and cut sometimes, and I can be indifferent to that because in some way, this is life. It hurts. Maybe I am one of those things, where I never was before, that leaves a mark and challenges your coping skills, or maybe I am broken in half and you slide between my sharp edges. I don't know.
I just know that it still feels like it's awkward to talk about it all. It feels hard to reach out to someone who could actually probably really help me. It feels terrifying to think about healing, because it's a place I don't know and I'm just starting to get my bearings here.
How am I doing? I'm doing. That's all I know.
Monday, April 1, 2013
Forgiveness
I thought I forgave you, but I take it back. I thought that my heart was supposed to be open, to be compassionate, and I realize now that in my desire to see your side, I side stepped my own. I silence the hurt in my own heart so that I won't blame you.
I do not forgive you for what you did not do. I do not let you off the hook and I don't care about what you thought, or didn't think, about what I needed. You didn't even try.
So fuck you and your fifteenth chance, and fuck me for wanting to give it to you. I can do no more than what I've done, I must stop telling my sad heart that she must be bigger than you, that she can hurt but to keep the big picture in mind, ever making excuses for you and your selfishness.
My focus is narrow and there is no room for you and your bumbling ways. I see only my damaged heart and the suitcases of hurt I carry at your hands.
I do not forgive you for what you did not do. I do not let you off the hook and I don't care about what you thought, or didn't think, about what I needed. You didn't even try.
So fuck you and your fifteenth chance, and fuck me for wanting to give it to you. I can do no more than what I've done, I must stop telling my sad heart that she must be bigger than you, that she can hurt but to keep the big picture in mind, ever making excuses for you and your selfishness.
My focus is narrow and there is no room for you and your bumbling ways. I see only my damaged heart and the suitcases of hurt I carry at your hands.
Tuesday, March 12, 2013
Results
Today went really well. I did have a little cry when we were walking up that tunnel (pictured in a previous post). The last time I was there I was being wheeled down it, post surgery, newly without-cancer. The last time I'd walked up it, I thought I was going to my last needle biopsy before surgery so this little journey was fraught with heavy emotion. Randy folded me into his arms and said so confidently, "It's okay." I knew he knew it was, I trusted that, it felt just right. I was so, so glad he was with me. I had a moment to just cry for a second and I pulled myself together and we waited for my name to be called.
I laid on the ultrasound table and this fabulous tech- I can't remember his name, but he does all of the neck scans so he's VERY good - started my ultrasound. First I had to look to the left which meant I couldn't see the screen. I slept like crap last night so laying there with the regular click..click...click... of him snapping the photos (which meant that he wasn't seeing something scary because they were at regular intervals) and the hum of the machine, in the dark room, holding my husband's hand - I kept falling asleep. :) It was actually really nice to be so relaxed, and I was really reassured by how steadily forward things seemed to move as he scanned from my thyroid bed up behind my ear.
When I could finally watch the ultrasound it was interesting as ultrasounds are, but I'm not familiar with that anatomy so every little lump was an opportunity for him to start measuring- but he never did. They must have been lymph nodes, and boy, we have a lot of them! Guard those little suckers! He kept going and clicking and making comments to himself I couldn't hear but that didn't worry me, and I kept trying to watch, and kept nodding off... It took about 30 minutes or so I think. It didn't take long. When we finished he said, "I need to go look at the film but it all looks really good. I'll be right back." What I heard was, Your resolution is good, the quality of the film is good.
We waited a few minutes and he came back and explained that the radiologist would have to review it and then send results to my doctor but that we could find out probably in 2 days about the results, "...but like I said, everything looked really good."
Yeah!!! The tech probably was the person most qualified, next to the radiologist himself, to tell me that he didn't see anything worrisome. I normally wouldn't bank so much on a tech's opinion but this time he is probably the most expert person I could have asked for.
I left feeling happy and at ease- no traumas or difficulties today, thank you! While I was out getting groceries I got an email from my endocrinologist:
Hi Kristina,
The neck ultrasound results are back and it all looks good. The radiologist did not see any abnormal or suspicious appearing lymph nodes in the neck and no evidence of recurrent or residual disease from where the surgeon removed the thyroid. The results look good and the ultrasound can be rechecked in one year. Let me know of any questions about this.
Dr. S.
I had pulled over to get the email and as I eased back onto the road and came over the crest of a hill, there was a giant rainbow right there, smack! It was like the cherry on top. :)
I laid on the ultrasound table and this fabulous tech- I can't remember his name, but he does all of the neck scans so he's VERY good - started my ultrasound. First I had to look to the left which meant I couldn't see the screen. I slept like crap last night so laying there with the regular click..click...click... of him snapping the photos (which meant that he wasn't seeing something scary because they were at regular intervals) and the hum of the machine, in the dark room, holding my husband's hand - I kept falling asleep. :) It was actually really nice to be so relaxed, and I was really reassured by how steadily forward things seemed to move as he scanned from my thyroid bed up behind my ear.
When I could finally watch the ultrasound it was interesting as ultrasounds are, but I'm not familiar with that anatomy so every little lump was an opportunity for him to start measuring- but he never did. They must have been lymph nodes, and boy, we have a lot of them! Guard those little suckers! He kept going and clicking and making comments to himself I couldn't hear but that didn't worry me, and I kept trying to watch, and kept nodding off... It took about 30 minutes or so I think. It didn't take long. When we finished he said, "I need to go look at the film but it all looks really good. I'll be right back." What I heard was, Your resolution is good, the quality of the film is good.
We waited a few minutes and he came back and explained that the radiologist would have to review it and then send results to my doctor but that we could find out probably in 2 days about the results, "...but like I said, everything looked really good."
Yeah!!! The tech probably was the person most qualified, next to the radiologist himself, to tell me that he didn't see anything worrisome. I normally wouldn't bank so much on a tech's opinion but this time he is probably the most expert person I could have asked for.
I left feeling happy and at ease- no traumas or difficulties today, thank you! While I was out getting groceries I got an email from my endocrinologist:
Hi Kristina,
The neck ultrasound results are back and it all looks good. The radiologist did not see any abnormal or suspicious appearing lymph nodes in the neck and no evidence of recurrent or residual disease from where the surgeon removed the thyroid. The results look good and the ultrasound can be rechecked in one year. Let me know of any questions about this.
Dr. S.
I had pulled over to get the email and as I eased back onto the road and came over the crest of a hill, there was a giant rainbow right there, smack! It was like the cherry on top. :)
Let's do it
Struggling with feeling very, very insecure about wanting someone to just think of me today, and feeling like such a big dork because it's 'just an ultrasound'. I feel torn, like I'm being a drama queen, and then laying in bed at night with anxiety thinking, how can one over dramatize cancer??
Today Eidie will go with a friend who will be her mama for the afternoon while I go turn back into the little girl that cancer breaks me into. The little girl who hugs her cancer-fighting cape and cries during the ultrasound because she's afraid they'll find something, and afraid they won't.
"Just" this. "Just" that. Just an ultrasound. Just thyroid cancer. Just surgery. Just a moment that completely shifts your life and you can never, ever get it back to the way it was, and now it has worked its tendrils through everything you do, everything you think. My period is 15 days long? Maybe there's a tumor in there. What is this lump in my neck? I was constipated today, maybe it's colon cancer.
NO joke. This is my life.
I will say that I no longer have the constant stream of thoughts of my death anymore. THANKFULLY. It actually stopped after I went to that group - which I've since decided I'm not going back to, at least not right now. But it feels good to not be constantly imagining what it will feel like when the oncoming car crashes headlong into mine, or what it will feel like to be ejected out of the vehicle, or to have my heart stop while I'm sleeping. I had these thoughts hundreds or thousands of times a day.
I'm super, super super busy with work now and it's a double-edged-sword. I work a lot when I start to feel like things are a little too close. With the ultrasound today and my mother's birthday tomorrow- her first since she died- I'm a little on edge. I need a good hard cry and then I'll probably feel better but right now I feel tightly wound and sad around the edges of myself - but mostly I'm grateful to have so much to DO so that I don't have to BE with all of this.
I do feel like things are starting to feel like a new normal now- things feel new, but familiar again- and then I have days where it feels like someone threw me into deep water and I don't know which end is up, I don't know which way to swim. Sometimes I swim down, but mostly I shoot back up to the surface. I'm nothing if not resilient!
If they find something growing they may want to do a biopsy today. I think I will decline and say, "Cut that shit out." Why wait for results? Let's just get it out. If there's something NEW, it ain't good. I'd rather not have more biopsies.
Today Eidie will go with a friend who will be her mama for the afternoon while I go turn back into the little girl that cancer breaks me into. The little girl who hugs her cancer-fighting cape and cries during the ultrasound because she's afraid they'll find something, and afraid they won't.
"Just" this. "Just" that. Just an ultrasound. Just thyroid cancer. Just surgery. Just a moment that completely shifts your life and you can never, ever get it back to the way it was, and now it has worked its tendrils through everything you do, everything you think. My period is 15 days long? Maybe there's a tumor in there. What is this lump in my neck? I was constipated today, maybe it's colon cancer.
NO joke. This is my life.
I will say that I no longer have the constant stream of thoughts of my death anymore. THANKFULLY. It actually stopped after I went to that group - which I've since decided I'm not going back to, at least not right now. But it feels good to not be constantly imagining what it will feel like when the oncoming car crashes headlong into mine, or what it will feel like to be ejected out of the vehicle, or to have my heart stop while I'm sleeping. I had these thoughts hundreds or thousands of times a day.
I'm super, super super busy with work now and it's a double-edged-sword. I work a lot when I start to feel like things are a little too close. With the ultrasound today and my mother's birthday tomorrow- her first since she died- I'm a little on edge. I need a good hard cry and then I'll probably feel better but right now I feel tightly wound and sad around the edges of myself - but mostly I'm grateful to have so much to DO so that I don't have to BE with all of this.
I do feel like things are starting to feel like a new normal now- things feel new, but familiar again- and then I have days where it feels like someone threw me into deep water and I don't know which end is up, I don't know which way to swim. Sometimes I swim down, but mostly I shoot back up to the surface. I'm nothing if not resilient!
If they find something growing they may want to do a biopsy today. I think I will decline and say, "Cut that shit out." Why wait for results? Let's just get it out. If there's something NEW, it ain't good. I'd rather not have more biopsies.
Sick of it yet?
Are you sick of me yet? Sick of talking about cancer and sick of me bringing it up? Sick of me posting my link to Facebook so that someone can read my story- sick of me show boating about it? Sick of me whining about my little scar when people you love have died or suffered through chemo and amputations and hair loss and sickness?
Are you sick of hearing me cry because I'm scared about an ultrasound when it was 'just a little cancer'? Sick of it coming up in conversation? Sick of hearing about how my 2012 sucked? Sick of hearing me worry about every single time I have to go to the doctor and have something checked out, or my deep self-analysis into the 'why' I process the way I do?
Are you sick of my cancer?
I am too.
Are you sick of hearing me cry because I'm scared about an ultrasound when it was 'just a little cancer'? Sick of it coming up in conversation? Sick of hearing about how my 2012 sucked? Sick of hearing me worry about every single time I have to go to the doctor and have something checked out, or my deep self-analysis into the 'why' I process the way I do?
Are you sick of my cancer?
I am too.
Saturday, March 9, 2013
Ultrasound
Randy and I were driving down the road and he started saying something about my ultrasound "..on Tuesday..". I corrected him, no, my ultrasound is on the 23rd. The next thing I have to deal with is my mom's birthday on March 13, the first one since she died in October. I'm kind of focused on that right now.
No, he insisted, it's on Tuesday. I was worried he was right and I checked my calendar. When I saw that he was right, that the ultrasound is just a few days away, rather than weeks, that it happens the day before my mom's birthday, I burst into tears.
Randy was speechless for a few moments, and I was crying hard enough that I couldn't form words to try to tell him what was wrong. I wasn't really sure what was wrong, I just knew that suddenly I was freaking out a little bit.
No, he insisted, it's on Tuesday. I was worried he was right and I checked my calendar. When I saw that he was right, that the ultrasound is just a few days away, rather than weeks, that it happens the day before my mom's birthday, I burst into tears.
Randy was speechless for a few moments, and I was crying hard enough that I couldn't form words to try to tell him what was wrong. I wasn't really sure what was wrong, I just knew that suddenly I was freaking out a little bit.
I realized that I was trying to categorize the experiences again, that I could do one thing at a time. First I will deal with my mother's birthday, and then I will make space for this ultrasound. Hah!! Very funny.
So here we go again - another ultrasound. I find as I get closer to it I'm noticing more and more little funny things about how my neck feels. I found a lymph node in my neck that is hard and I wonder, has it always been like that? Should I ask them to look at it? Am I clearing my throat a lot? Is that pressure I feel?
So crazy, this journey. Nothing medical is ever just simple anymore. Now there is the potential for great big scary things to come bursting out of me, or needing to be shoved into me in some fashion. Now my body and heart know what it's like to hear the bad news, and I can't un-know it. So, I'll have my ultrasound on Tuesday. I'll wait impatiently and try not to second guess everything. I'll get the results. If there is something new, I will soldier on. If there is not, then I'll breathe out, until the next intake of breath when I have to go back to the doctor for some other thing.
So here we go again - another ultrasound. I find as I get closer to it I'm noticing more and more little funny things about how my neck feels. I found a lymph node in my neck that is hard and I wonder, has it always been like that? Should I ask them to look at it? Am I clearing my throat a lot? Is that pressure I feel?
So crazy, this journey. Nothing medical is ever just simple anymore. Now there is the potential for great big scary things to come bursting out of me, or needing to be shoved into me in some fashion. Now my body and heart know what it's like to hear the bad news, and I can't un-know it. So, I'll have my ultrasound on Tuesday. I'll wait impatiently and try not to second guess everything. I'll get the results. If there is something new, I will soldier on. If there is not, then I'll breathe out, until the next intake of breath when I have to go back to the doctor for some other thing.
Subscribe to:
Posts (Atom)