Taking/losing control

Well, I tell myself that's what I'm doing- and in a very sick, sick manner.

I've been eating like absolute shit since I found out about the cancer. I was making a serious effort to really reduce the amount of sugar I was consuming and doing a good job staying away from gluten. Then I found out I have cancer and now I just can't pile enough junk food into my mouth fast enough.

As I'm eating it I think, "I know I shouldn't eat this, but fuck it." I know that I won't feel good, but I eat it anyway. Eating actually feels like a self punishment than self care. When I eat I feel this fine edge of anger.

I didn't even realize it until I woke up this morning feeling queasy and I noticed that I've been eating Tums several times a day (up significantly from a couple of times a week, if that).  It's harder for me to maintain stable blood sugar all day because I skip breakfast, eat (drink) crap for lunch and then don't eat again until dinner, and then drink coffee and pop in between. Bad. Seriously bad.

I know it. I am not beating myself up but I know I'm not making a good choice. I just feel like if my health is going to be screwed up, I should get the pleasure of being the one who did it. It's pretty stupid, and I also feel like it's my right to act out a little bit. That's really what it boils down to- I'm acting out.

Consequently I don't feel good, I have acid reflux almost constantly, my blood sugar is wacky, I'm tired, my brain is foggy and the last thing I need before I lose my thyroid is to GAIN more weight.

I want to drink. I don't drink much, rarely ever. I might sip Randy's beer to taste it but I rarely ever have my own- but I just want to drown this whole ball of crap in a nice run of drunkenness because at least that way, the cancer is funny and a good reason to have another, rather than just this thing that makes me sad.

I'll pull it together, but right now, this is my answer to cutting, or drugs, or drinking - I'll just eat crap and feel bad because I can.

Please, don't bother enlightening me to the sins of my ways - I know quite well exactly what I'm doing.

Sometimes when I am hurting, I am so detached from it that I will bite myself hard to feel SOMETHING. This is like that. I am so far away from this whole thing that I feel like feeling bad is the only way I can get into my body. I'm detached and floating high above it, but when I hurt, I become one again.

This is also called 'coping', my friends, even if it's ugly.

I finally had a good cry last night and now I just feel bitter about this whole damn thing. I'm sick of hearing the "best kind of cancer". It's still cancer. It's still time away from my family, appointments, worry, money, someone cutting open my body and removing a functioning part of me. It's still my body. It's still cancer. I split between the part of me who understands that this is just where I need to be right now, it's in its own way, perfect. The other side of me is wondering how the hell this happened to me and why I have to go through it and is having a serious tantrum with screaming and flailing body parts over this whole damn thing.

Don't tell me it's "JUST" this or that. It's not you going through it, it's me. The only person who can know what this means to me is me, and I still don't know, so how can you?

I guess I've turned some kind of corner, but now I'm walking down some pissed in alleyway and I have to smell the stink for a while before I can go back out again.

At the end of the day

at the end of the day
the tears come because his arms are
warm
and I don't have to explain it or defend it
they come because I am a
child inside
who is angry about how unfair this is
this cancer
CANCER
the tears come because
i don't want my body
cut open
parts removed
parts of me, chipped away
i don't want it
the tears come because i am
afraid it will hurt
that i don't want my
life to change
in this irrevocable
unforgettable
unlikely
unwanted way
I'm sad to let go of the
me
that I was 12 days ago
6 months ago
before I ever had to say the word
cancer
to myself, my husband, my children
to have it woven into the
tapestry
of my life
the tears come because
it's time

Fake it till you make it!

Living in the world of assumptions, that what 'is' today, 'will be' tomorrow, is a curious thing. I assume that because I generally feel pretty clear about this cancer thing that I shouldn't be upset about it. When I do feel upset about it, I don't feel like I'm in the moment, I feel like I'm focused on the wrong thing. When I wake up because of anxiety, I feel like maybe I'm not coping as well as I 'should' be. I know these things aren't true, they're just stories, but it still sits in my body this way and I am still finding my way with it.

Today I feel short of patience and that I wish I could have a good cry. I am a pretty emotional person but for some reason crying is difficult. I often wish I could, but until something really acute rises up in me, I'm sort of stuck. Today is like that. I met all day with the wonderful people who are working with me on the food co-op and made arrangements to take a leave of absence in July-August. Their feeling was that I might want to take a longer leave (considering I still have to do radiation in September and may still be sorting out thyroid med dosages and/or feeling crappy). When we edged around the topic I just felt this sadness in me that feels very far away and very real, all at the same time.

I just feel what I feel, I don't feel like I shouldn't- but it always surprises me. I felt really good with all of this the last few days. Today I feel tired of it already. Knowing that on the 18th I might have another biopsy really truly causes me to want to curl into a ball and cry because I'm scared. I am putting my energy into focusing on NOT needing one but I just don't have a lot of faith in that, it doesn't resonate.

I remember when I was 12, I was enrolled in modeling school (haha, I totally was!) and it was "learn to tweeze your eyebrows" day. I was so scared of having my eyebrows plucked I was positively shaking. The woman teaching us how to shape our brows went around to each girl around the periphery of the room and pluck, pluck, plucked. The woman got closer and closer to me and I was damn near bursting into tears because I just knew it was going to be excruciating, and she leans in with her tweezers, makes a face, backs up a few feet, looks at me again and says, "You're good. You have a beautiful shape to your eyebrows." Not one hair was removed from my face that day and I was the ONLY girl who didn't need a little help. I was all scared for nothing.

I'm hoping this is like that, too. 

It doesnt' help me to read the accounts of other people who talk about how 'easy' it was to get through all of it. When it's behind you (like birth), it's easy to minimize the intense work it takes to get through something like this - your memory is so kind to you, it erases all the jagged edges and makes them soft enough to live with for the rest of your life.

I know that this is the case with this too and I wish I had someone who was freaking out too, just a little bit, sometimes. Everyone's at ease. If they're not, they're not telling me.  It's not that I think I'm going to die, I really don't. It's not that I'm scared of having cancer, I'm not. It's just that this whole think is so hugely enormously small - the best cancer you can have is helpful in some ways and so minimizing in others. It's CANCER. And, it's also just cancer.

How I feel about it, I'm realizing, depends on the day. Today, it feels like CANCER.

The New Normal

I'd say that this information is properly integrated. It's no longer all I'm thinking about (more like a hum in the back of my mind). I hate to say that I've 'accepted' that I have cancer, because I Do Not Accept It. However, I'm no longer in shock over it, my emotional footsteps seem familiar and less tentative. I am breathing in, and out, and it's easy again.

I do notice that I am a wee bit more prone to be anxious about little things and I know that it's just a cost of this that I have to pay, a touch of sanity. Sanity is over rated. I'm sleeping well, I'm having my life. It just catches me unawares sometimes- especially when I'm with my friends. I feel my heart break just a little bit.

I remember when another friend of mine - I unfortunately didn't know her real well, but we called each other friends - found out she had cancer. Suddenly anything we needed to talk about seemed so trivial next to that. It was always the subject that stood like a specter in the room as our group of friends laughed and joked and planned for the future. This gun-metal gray cloud that had a tainted smell to it - just hovering off to the side at all times.

I can't help but wonder if this is similar, even in a small way. I feel it when I'm with my friends, this 'Thing' that's off the side of my peripheral vision, on the tip of my tongue. Are we going to talk about cancer? Should we? Is the timing bad? Is it bad that I want to anyway? Is this how every conversation is going to be? Go away, STUPIDCANCER!

It's not a big distraction but I know it's there, waiting for its chance to be the topic, and it scratches an itch to get to talk about it.

 I have to admit that I'm very scared of the surgery, even though it's very simple and done all the time- it's my neck. It's where my voice lives, my breath, and my jugular to boot. I am already holding the people who will be caring for me in the highest light and in my mind, I pray for their steady hands and bold hearts to touch anyone they're caring for, and especially me. I see them in light, giant orbs of light, in my mind, while they free my body of cancer - that they have made love to their partners, that they have eaten delicious, nurturing food, and slept hard and well. That they wake up smiling and joyfully looking ahead to their life's work- caring for other human beings. That I reap the benefits of their wholeness. That is my prayer already, and my surgery isn't scheduled yet.

I Dreamed of the preparation for my surgery and it was wonderful. In my Dream there was a 'Blessing' party with my friends, where people who couldn't be there sent in their love in writing, and in trinket gifts that I placed in a basket to come to the hospital with me. There was an electric candle that people passed around and whispered prayers into, that I could have lit in my room and waiting for me when I get out of surgery, releasing the prayers of all who were attending me in that way. I realized when I woke up that the candle is a brilliant idea, I can even henna the candle myself, so I'm going to see what I can do to at least have that much happen. The candle alone would mean the world - funny how the solid manifestation of the intentions of loving people is so anchoring.

I am grateful that I am not swimming upstream with this. I'm grateful that I know to let go and let the rapids carry me, even accepting that there will be bruises and bumps along the way.

The next hurdle is June 18th. I will have an ultrasound of my neck where they'll just look at the structures and prepare for surgery, and also look and see if any of my lymph nodes are in need of further attention. If so, I'll have fine needle aspiration (FNA) again, which I do NOT want and honestly am really scared to have. I'm all choked up just writing this. :( The biopsies are hard, stressful and really scary - it takes all of my coping mechanisms to get through them. This is the last one I will need, and if not, this is the last one I will consent to. I don't even want to consent to this one, frankly. If you see something worrisome, take the damn thing out, why are we poking it? I do understand why, but my fear justifies greater action to avoid this thing I don't want to experience. Silly fear.

After that appointment, I go up to meet the surgeon and ask her a bazillion questions. Dr. Amy Harper. She's the person who will cut open my body and remove cancer from it, and sew me back up. I've heard really wonderful, warm things about her and I know they will be true when we meet. I will also make sure to meet the anesthesiologist. No uppity jerks are touching me. Be cocky if that's what it takes for you to do your job, but if you can not warmly look me in the eye as a human being, you aren't invited to my "Kick Cancer's Ass" party. (The birth professional in me is laughing at what Dr. Amy's "raptors" would say to that- that I am caring about my experience rather than my safety! lol It isn't true, they just don't know that caring for the experience is ALSO caring for the safety!)

I told my doula clients that I have cancer and that was very nerve wracking- like telling my clients when I got pregnant with Eidie. I thought for sure they'd fire me, that I'd have 'too much going on' for their tastes but they embraced my pregnancy and were sensitive and caring, and I'm so relieved that my clients right now are as well. Gracious and lovely and caring and not dumping me. :) I'm glad to have solid back up and also that I don't have an aggressive cancer that requires me to change my whole life around to accomodate it. I will make room for it, on my time, on my terms.

Spiral in, spiral out

Breathing in, breathing out, that air spirals into the lungs and back out. This process is much the same. I am on the exhale now and it feels good. On Thursday I woke up sad, deeply sad and weepy all day. I spent some delicious time with friends and even got to burst into tears in a friend's grocery store (what fun!) I just felt worn down and heavy. I felt like I couldn't lift my face, or shoulders, or feet. It's a heavy thing to carry and I think I make it heavier on myself in a lot of unintentional ways.

I knew I had my endo appointment yesterday and on Thursday I declared that I would probably finally burst into tears and cry my face off, right there in front of the endocrinologist. If that's where it had to be, well then damnit, so be it.

I woke up yesterday and felt ease. My dreams all assure me that I will be victorious and honestly I haven't really imagined another outcome. I think I knew I had cancer, either that or the process prepared me for that possibility really gently and well. When I got the call, I wasn't surprised.

Meeting the endocrinologist, I felt like Dorothy putting her foot on that first step of the yellow brick road. I don't know what's ahead, but I know I can't stay here in Cancerland, and this funny spiral road is my way home. I don't need to know every twist and turn ahead and I know that wicked witch is going to show herself again (fear, pain, worry, concern, sadness) and that's just part of this journey. I also know that I'm surrounded by Scarecrows, Tin-folk and ferocious Lions, all along the way. I'll take it. It's forward movement.

I have cancer. It still sounds odd but I think it sounds odd in a very healthy way- that if I integrate this information fully, I am accepting it. I do not hate cancer, I appreciate that it's here to teach me something, and I hope that my heart blasts wide open and picks up that information quickly so that it can go away, away, away.

I teach my students that if we are moving away from something, we're looking behind us and can't see what's ahead as easily as if we move toward something. What happened in the past is done, over, and can't repeat itself- not truly. What's ahead? I don't know. I am looking forward with curiosity and an open heart because that's what I know how to do. I know how to learn and love and trust. I'm good at those things. Being afraid, worrying, fretting - I'm not so good at those things. I'll stick to what I'm good at.

Post Endo appointment

So, updates. I met with a really lovely and kind endocrinologist who will be my 'cancer watcher' for the next 10 years. I have to have an ultrasound of my neck to take a look at the lymph nodes and see if any warrant concern before we have surgery. I'm going to meet with the surgeon I chose who comes very highly recommended as a skilled, fun person (yay!). I'm working to schedule my surgery for after the births I have coming up, so mid July.

After surgery I'll be probably pretty low key for a month and then I'll have radiation. I have to be at least arm's length away from other people for 72 hours - I'm thinking nice hotel room with room service - and then I have a full body scan to make sure the cancer isn't setting up shop in my bones, lungs or brain (bad news). After that's all clear, I'm considered 'in remission' and after 10 years of remission, I'm cured. :)

Thanks today to my friends who hung out with Eidie and got her dropped off with a saucy attitude and totally happy. :)

I'm not sure I'll be going to Uganda. I'm not ready to really think about it, but at some point I need to just consider that rebounding might not be instant like I'm imagining it will be, and I could still be pretty whacked out from thyroid replacement balancing at that time. So we'll have to see.


About my provider- he was so kind without being sappy, he didn't do that irritating 'I'm the doctor so I know what you're going to say and will answer before you finish asking your question' or, 'I'm too busy for this.' He just listened, looked me right in the eye, laughed at our terrible jokes, didn't talk down to me or over my head, referred us to additional resources, was very supportive, knew about modern treatments- I'll keep him. :)


I'll have to go to Seattle for the ultrasound, to meet with the surgeon, and for the surgery itself. 

All in all, a good day. I don't love that I have to really think hard about my commitments this summer and the idea of letting go of the Uganda trip is just not something I'm ready to put a lot of thought into until after we talk with the surgeon and can establish the timelines a little better.

For now, I'm looking to do nothing until after my two mamas have their babies, and then we'll just rock the treatment schedule around my trip to the Redwoods (which I am taking, whether I have a hole in my neck or glow in the dark or WHATEVER - I'm going), and then shooting to be able to go to Uganda. We'll see.

Appointment today

It's a relief to have this appointment today. Not because I have any super pressing questions, or am worried, but just because I want to get this show on the road. Let's start talking about surgery dates!

Here is the list of questions that Randy and I came up with. I really understand what the treatment cycle is going to be so there aren't a lot of questions here, really. I'll sum up the treatment cycle (assuming of course that all is well and the cancer hasn't spread anywhere outside my lymph nodes, but we're not talking about that, because it's SO unlikely).

First, I will go on drugs that will suppress my thyroid function. The pituitary gland releases TSH (thyroid stimulating hormone) and this hormone tells my thyroid to "kick in". We suppress the TSH because when the thyroid kicks in, essentially it is feeding the cancer by doing what it is supposed to do.

Second, I'll have a complete thyroidectomy, removal of my entire thyroid gland (except my parathyroid which is important to keep but I don't know the anatomy well enough to talk to you about this). The recurrence rate of cancer is high enough if you leave thyroid behind that I want the whole thing out. If we're going to cut, let's make it worthwhile. They will also remove a few of my lymph nodes to see if the cancer has moved there. If it has, it won't really change my treatment - or my prognosis. It's just important to know.

Third, I will have a radioactive iodine treatment. This will kill off any of the remaining thyroid bits that are left behind after the surgery (it's not like lifting out a heart, it's a very spongy bunch of cells) and also kill off cancer left in the lymph nodes as well. This is where my treatment would vary if I had cancer my lymph nodes- it would be an increase in the amount of radiation I had to have. Depending on the amount I need, I may have to stay in the hospital because I'll be giving off radiation for a few days (!!!holyshitballs!!!!).

Last, after I am cancer free, I will be monitored by the endocrinologist for 10 years. Once I reach that time, I am considered 'cured' of cancer. I will be on thyroid replacement drugs for the rest of my life.

Here are our questions, feel free to add yours. The appointment is in about 5 hours!

1. What is the timeline for the treatment? How long in between phases?
2. Will you be my endo forever? How often are we going to hang out?
3. Surgery questions:
1. Can the surgery be timed? I'm a busy woman with people who are counting on me. Mid-July would be awesome.
2. Who will do the surgery, the endocrinologist or someone else (sometimes the endo is a surgeon)?
3. Where will I have surgery, preferably not in Seattle (because of distance from my support system)?
4. How long will I be in the hospital? 
5. How will I feel afterward?
6. How long will I be restricted?
7. When can I work?
8. Complications?
4. Radiation questions
1. How soon after surgery do we do this?
2. Pills or drink?
3. Dosage depends on lymphs so what will I experience either way?
4. TSH suppression with or without drugs?
5. Risk of radiation treatment/risk of not having it
6. Increased risk of leukemia- by how much?