Monday, September 17, 2012

Scars and kids and adults and knife fights.

One interesting thing that's happened because of this wide, red scar on my neck, is that children see it and can't resist asking. I have to admit this - when the parents are looking extremely uncomfortable and embarrassed that their child has blatantly asked me, "What happened to your neck?" -- I die laughing inside. Not in a mean way, but it's just so cute, and so sad, that we don't have a better way of dealing with obvious scars, injuries, than to sort of choke back a horrified and apologetic laugh when the most honest of us does what they do- asks questions!

One little girl, special to my heart, has a ritual that whenever we're together, she has to swipe her finger across my scar. I can tell she needs to do it so I lean down, she does it, we both look at each other and laugh. I appreciate that someone acknowledges my scar. It's hard to miss it, it's red and still healing. I haven't gotten the chance to use my "Knife fight on the docks of Beijing" story yet which kind of bums me out. Heh!

I know it's not true for everyone, but I like being asked. The thing that I enjoy most about being asked about my scar is that someone knows me well enough (or feels from me) that I would be open to talking about it. I totally am. I had cancer, and now I don't- score!

Now if adults start walking up to me and stroking my scar, there may be an actual knife fight.

Monday, September 10, 2012

GYN and more

Last night I had the first dream ever of actual cancer. In my dream I was rubbing the back of my neck and felt a lump there, and I just felt this weariness, this sense of resignation, that I was growing tumors and I knew that this would go on and on and on until I eventually died. I wasn't sad or scared, it just felt like resignation.

I woke up and realized that I need to stop saying out loud, "Now that I know my body grows cancer." I may have grown cancer once, but that doesn't mean I'm destined to always be disposed to it, right? I can still send my body messages that it rejects insane overgrowths of cells, that it calms those crazy bastards right down.

I also need to be honest and realistic- my body did  grow cancer, and while that doesn't mean I'm ever meant to have it again, I will be responsibly vigilant. I met with my OB/GYN on Friday (I guess seeing as I don't need an OB anymore, I can call him my GYN? lol) and we had a great talk. I was worried I'd have to sort of 'sell' him on what I want, and why I want it. Why, after 12 years in his care, I have these worries, I don't know.

We talked first about risk factors. My mom had her ovaries out when she was 24ish. Her mother was adopted, so we have no family history there. My paternal side of the family doesn't have any reproductive issues that I'm aware of, but I've had PCOS since I was 15 and I've had a benign tumor removed from my ovary in 2002, and just always wondering if something untoward is going on in my innerly bits. I figure of all the things to keep an eye on, let's pay attention to the ovaries.

He agreed. He said that my history doesn't predispose me to ovarian cancer but that the majority of people who get it are in that same boat- not predisposed to it. We talked about testing for it and he said that when providers discover ovarian cancer, it's already stage 3 cancer. I was taken quite aback by that statement, so much so that it made me cry when he said it. I rest so much comfort on the fact that my cancer was simple, that it had not even spread to my lymph nodes, that it was "Stage 1". Finding out you have ovarian cancer at a Stage 3 scared me right down to my toes.

He saw the tears and explained that it doesn't mean a life sentence- that you can find a Stage 3 that is very easily removed and that with chemo, the prognosis is great, and you can find a Stage 3 where none of that is true and the worst case scenario is realized. It's a spectrum, essentially. You don't find a Stage 1 unless you're removing everything for another reason and it's discovered in the pathology. That made sense to me, a lot of people don't know they have thyroid cancer until they have their thyroid removed for some other reason and it's discovered that same way. Women with ovarian cancer generally have symptoms that bring them to the doctor, and it's the fact that it's advanced cancer that causes the symptoms, which is why it's found at Stage 3 and not sooner.

So we talked about testing and he is not a fan of the CA-125 test at all. Frankly, I don't want a false positive. I have had my being changed enough hearing the words, "Yes, it's cancer." I don't need to hear it again - once you've heard it, even if it proves to not be true, you can't undo what it does to you. So even if I know it's possibly a false result, why put myself through that? He suggested an alternative is to have an ultrasound of my ovaries annually. Well, that sounds reasonable! He said that we can observe changes and while it's not perfect, it's less stressful than a faulty blood test.

(I was thinking as I was hearing this, if I was a man, what kind of tests would they have for me? I bet they wouldn't be settling on the poorest screening tests in the entire world for a cancer that kills women like crazy, if I just had a penis. Gahh!!)

So I'm scheduling an ultrasound. Going to try to make it happen before I leave, and we'll just see. I don't expect we'll find a single thing, I feel totally fine (haha, so funny that I continue to say that! lol I felt fine and I DID have cancer! Feeling fine means NOTHING!) so I'm not worried that anything is going on, I'm just grateful to have a supportive doc who gets it, who I didn't have to try to convince. So, so grateful.

I talked with my brother tonight about therapy and some of my feelings and he had some great insight for me about the family, my expectations, and their possible perspective on things that really helped me shift some energy. What he said resonated and I feel a little better about things- and I feel like while I'm not going to change what I'm doing necessarily, I don't have to think things that are just thoughts and not facts, and I don't have to sit here feeling hurt. It's not a perfect answer right now but it's a huuuuge step in the right direction. That's what I needed.

It's funny how readily available the sadness is sometimes about this whole experience. For I'd say, 95% of the time, I am moving forward and while still in kind of shock that it even happened, I feel really healthy emotionally, very balanced, and that I have good perspective. 5% of the time I'm just hit with this incredible sadness and I struggle feeling ridiculous. I always think, "What if I was someone else, would I just shove it aside? Ignore these feelings? Am I being dramatic for letting myself feel it? What would Barbara Hererra say, would she threaten to come up here and shake me again? ;) I do NOT want to wallow. I have no time for that (literally- NO time!) But at the same time I want to honor these feelings as they arise and just let them wash over me, cry, take a deep breath and pull back into the busy traffic of my life. So that's what I do.

Sunday, September 9, 2012

Slogging through

Today I was in the grocery store, and I felt the now-familiar sensation of anxiety rumbling in my belly. My breath started coming fast and everything looked very sharp, and very clear. I knew right away that I was on the edge of a panic attack, and I slowed my breathing way, way down. I felt this moment and just noticed, rather than fought. It's like being on a river and knowing that your best way out of danger is to ride it for a while and steer within the current, rather than trying to paddle up stream.

Ever since I went to the Redwoods and had that crazy panic attack, I notice that anxiety is just something I get to experience now and then. Curious. Fortunately distancing myself emotionally is something I'm good at- in a healthy way, not like a cold, mean way. I can switch into observer mode which allows me to look at things from far away and be curious, rather than trying to catch my breath while dipping under the churning water anxiety dumps over my head.

I'm getting ready to go to Africa and I just know some stuff is going to come up. Ask me what stuff it is - couldn't tell you - but every day I just feel a little like I'm in between different worlds rather than fully present.

Considering how much happened this summer, cancer being the biggest, but also fundraising all summer long, and then preparing physically, and now finally emotionally, for an enormous trip - it's no wonder some anxiety is coming up now.

It feels right, and it feels okay- and I don't like it. I don't like waking up in the middle of the night with a racing heart, or that wide-awake-adrenaline-sensation where my eyes pop open and stay open for a long time. It's uncomfortable, and who wants to be uncomfortable? No matter how well I know that 'uncomfortable' is where the juicy pulp of life really is, it doesn't make me happy to experience it!

I keep trying to find a way to say that my family didn't call me when I had cancer, or surgery- a few facebook comments but no phone calls, no one at the hospital, - and I'm scared to put that out there and have people judge my family, but the truth is that I'm still struggling with this experience and not knowing how to process it. It's the #1 topic with my therapist. How can I not speak it? So there it is. Generally, when someone is experiencing a crisis, the whole family swoops in with food, jokes, baby sitting, vigils, prayer- and I didn't get it. Getting invited to participate in family events now sort of leaves a bad taste in my mouth, and I don't want to carry anger around, and I want to be understanding, but on the other side I do NOT get it, and I don't honestly give a shit about reasons. See- I'm very conflicted, and unclear, and unsure how to proceed in a healthy way with this, and honor my family and their experiences and journey, and respect everyone even if we aren't on the same path together- and I'm not there yet.

Saturday, September 8, 2012

Cancer, therapy, family, etc.

I am feeling like my self again- I would dare to say my 'old' self but she died. I'm a pretty close facsimile I'd say, I laugh easily again, I once again have a problem shutting up and listening. Life feels easy, and like there's a rhythm. I don't feel like I have to make room for cancer anymore, it happened. It's not still happening, at least physically.

It does feel like I'm still working through it all. In some ways I feel like I'm coming out of that shock that happens when you instantly accept the most unacceptable thing, because what choice do you have? And then later, after the crisis is over, you take a deep breath and your hands start shaking and your chest is heavy and you just don't know why.

Today we were in the car listening to the radio and this beautiful acoustic version of 3am from Matchbox 20 came on. I said, "He wrote this song for his mother who had cancer." And then I started to cry. I had cancer. I had it, just like she did. I was loved through it, just like she was. I don't know her, I don't know her name, but we had cancer, and thankfully, we both survived it. My friend Leah, she's moving through her cancer, too, surviving, and living, and inspiring. We're here, and life does go on, and then sometimes it comes to a screeching halt and we wonder why, and how, and what are we supposed to do?

It's weird to have had a cancer that seems so trivial and enormous at the same time. When I say it, it's such a small word, but not benign in any way. When I add "thyroid", it takes something away. People are more comfortable with it because it means it was 'no big deal'. It wasn't a big deal, looking backward. Today, it feels that way- and when I was in it, it was one of the biggest deals of my whole life.

I've decided to start going to therapy, I have all this energy that is stuck inside me and while I've been an excellent therapist for myself over these many years, I am at a point where I don't know where to go.  My family relationships are terribly damaged and I didn't realize how much until I had cancer, and my phone didn't ring. I had surgery, and other than my mom and my aunt (who is my best friend, sister, aunt, mother all in one), my family didn't call. I didn't know what to do with that, I still don't. I don't know how to go to birthday parties, and weddings, and celebrate life transitions and moments when I was not held. I don't know if I'm angry, but I'm very, very sad. Very sad, and I don't know how to go forward in a healthy way for me. So, off to the therapist. This is just too big of one to do on my own.

Friday, August 17, 2012

Opening doors

Isn't there a saying, that when a door closes, a window opens, or something along that line? I think that's where I'm at- standing right in front of the window, shades thrown open, window wide with the cool breeze of inspiration, of the potential of the future, blowing gently against my skin.

While I still feel like I am in the churn of things (I dreamed this morning that I was in a helicopter over an oil processing plant in Alaska, and part of that was this deep cavern in the earth where giant augers constantly churned the raw oil that had been collected from the earth. Another helicopter was there too and fell into the oil and I watched as it went under), I definitely feel like I'm no longer in the helicopter that was getting sucked down into the muck and turned under. I guess I have a little distance, at least today. It's good. My heart feels light and I am embracing that sense of wonder and curiosity- what will happen next?

I've started getting back to the co-op work. I'm so grateful to have been able to step away and leave the work in caring, committed hands. Sliding back into the flow of things is easy and difficult- some things have changed and I want to see where it goes, rather than yanking it back into my way of doing things. Don't get me wrong, yanking it back was definitely on the table until I realized that there is good wisdom in letting everyone own a piece of it, rather than hoarding all that power for myself. It's not an easy lesson. I like control- in case you hadn't notice.

I think it's the practice of Letting Go that is important. Letting go that I am having little snatches of anxiety that I never had before. Letting go when my friends tell me, "You are different. You have changed."

I've reached an impasse in my ability to process some of the emotional baggage I'm carrying, and I just need a guide for a while. I didn't decide on a therapist, I just followed my 'nose' so to speak and I landed on someone who when I saw her website and photo, thought to myself, she's the one. It's so funny how these things happen. I can't keep going the way I am in the relationships with my (extended) family and I am at a loss as to what to do now, next, what to change, how to think about it, how to ease the hurt.

I dreamed that I was in my car and that Eidie was on the long, straight, country road, buffeted on either side by trees. I was talking to her and she was a little anxious, and I drove away from her, down the road. I was going to turn around and come back for her, but something about driving away from a small child on a long road felt so taboo and I felt like I was getting away with something. As I was driving away (I couldn't even see her in my mirror anymore), two cars came toward me and I realized that she was in the street, and also that they'd come across this small child out in the middle of no where and that I would probably have the police called, that there was no reasonable way to explain what I'd done. I raced back for her, terrified that she'd been hit, or worse (in my dream), found by someone else and would be taken away from me by CPS and the police, and how would I explain this to Randy?

The overarching feelings were that I was getting away with something taboo, and then the horrific guilt and shame of it when I was 'caught'. I have broken rules with my family, rules no one told me but that I broke nonetheless. I have crossed the line into the taboo, and I'm not sure that there is recovery from that. I know too much now, what the other side is like, and I don't know how to come back from a long journey pretending like I haven't changed. I don't know if this door is closed. I'm not ready to make that call.

So my "Window" is my therapist. We haven't met yet. I don't need to love her, I just need to be able to talk.

Saturday, August 11, 2012


I no longer feel that identifying this as a 'cancer' blog makes sense. It is, and it isn't, and cancer is so limiting. It's the aftermath that really churns up the good stuff and reveals the treasures long hidden in the silt of day to day life.

As much as I identify with the trees, the ocean has been a good healer for me too. My family took a trip to Rialto Beach. Doesn't look like much on a map, just a stretch of sand bordering the Pacific Ocean (is there any stretch of sand that borders that ocean that isn't much to look at? Come on.)

Having just driven up the coast of California and Oregon via 101 just a few short weeks ago, I saw the incredible sculpting power of the ocean, the endless stretches of beach and walked in talcum-powder fine sand.

When you drive up Mora road, you crest this little hill and the edges of the beach explode in front of you- nothing you ever expected. I felt at home at Rialto. It's raw, wild beach. It is on the edge of crashing ocean that smacks into the giant seastacks blowing plumes of water into the air. The beach changes from rocks that are worn smooth like river rock from the force of sand and water, and turning into a gritty sand at the edges of the water.

The trees. I don't know how to describe the wall of dead, driftwood trees- from tippy top to roots, that line the beach. It's a jagged wall that frames the beach from the forest. It's death and life - these trees, when forced up on the beach by the ocean, can kill you.

Sea lions come here to give birth. It is a wild place. It is on the harsh edges between worlds.

It felt like home, because I am the harsh edges between worlds right now. My tongue is sharp and quick, my words are direct and sometimes pointed. I don't mean for them to be, I don't know another way to be right now. I close my eyes and I see the roots of the trees, bleached white with rocks shoved into their woody flesh, and I see myself.

The long stretch of beach has black sand that looks almost oily when wet by the waves that like to surprise you. The dead trees seem to go on forever. The people walking on the beach aren't dipping their toes in the water or flying kites, they are chilly and quiet and keep to themselves.

I feel Coyote here, on the edges between the forest and plain, hiding in the twilight shadows (Twilight, hah!) - this beach is the essence of 'on the edge' because it is on so many edges, in so many ways. It was like physically being in a place that showed how I feel inside.

Wednesday, August 8, 2012


The last few days I've been dreaming about my throat. I think part of this is because I sometimes have this feeling of something in my throat being swollen, and I find swallowing feels very weird and not efficient, for lack of a better description. I'm trying to figure out which doctor I'm supposed to tell about this. Kind of waiting to talk with my endocrinologist on the 31.

Last night I dreamed that the denser tissue under my scar had swollen and that I realized that the doctor had left some gauze inside my wound when she did my surgery, and that it was now growing infected and "needed to come out". What am I holding back? I woke up searching for the thing that's sitting there, needing to be said. As I write this, I feel like I know what it is. Bugger.

The night before, I dreamed that I had woken up and that my voice (which is now basically fully recovered) had gone, and that I was back to having my voice hampered and silenced. It felt almost like because I hadn't used it properly, my voice was taken away from me.

I have developed a sort of performance 'awareness', in that if I don't write about something related to cancer, I'm not writing about the 'right' thing. Even though I know that a lot of this healing process has to happen on levels other than just physical, I feel in some way like I'm straying too far into the 'woo woo'. At the same time, this is where I'm truly at- and I also notice that I am becoming increasingly more introverted.

Introverted? Me?

I don't even know what to think about this. I don't like it. I will ride it out and do my best not to resist but it's VERY hard. I don't like how hard it seems right now to balance my relationships. I am hoping very much that this is temporary, but I will roll with it as it comes.

I did something today that I don't think I could have done a few months ago- I made a public proclamation (well, on Facebook) that I am not booking time with anyone else right now. I really can't bear it- the calendar, the worries about taking too much time away from my family, the 'trappings' that come along with it (do I bring a dish? how long should I stay? did I pack a snack for eidie? what if my car breaks down?) - it's all too much.

I feel myself stripping off the extra things like taking off clothes. However, I'm looking forward to getting back to births. A lot. For a while I was feeling like even that was too much and unsure I could even do it- and then this swell rose inside of me and I feel like it's where some of my healing will be done, it will be just the right place for me to be. I am good at holding space, and I am good at leaving my stuff aside- and the beauty of that open space is getting filled up by the intensity, inspiration, strength and honesty of a laboring woman. That is good medicine, and I am looking forward to discovering who I am in that space, now that all this is woven into the tapestry of me.

I'm also getting increasingly nerviously anxiously happy about going to Africa. For a bit the idea of waiting until January was quite appealing and it turns out that it's a go- and on September 24th I'll ride out with my colleagues, who will morph into becoming my friends, into the..... wild? heart? Yes, into the Wild Heart. I am working to let go of the idea that it will be the 'last' of my transformation and that I will get some kind of break from all of this intensity. I am laughing that I even have the balls to write it in black and white, because I know better. Boy, do I know better.

I told Cyndi today that I thought that my trip to the Redwoods would be my medicine, front to back- go, come back, be changed, go on with life, and we laughed about that.

Turns out every day is a Medicine Walk. Every day.

Tuesday, August 7, 2012

Going slowly

I kind of hit a little critical mass today, and I'm finding that I have those more often now than I did before. A lot of inner dialogue going on, a lot less external processing.

Lately I'm finding that I'm still not slipping into the old stream nearly as easily as I thought I would. It's like the water doesn't know me anymore, and I don't remember its chilly bite, so it shocks me rather than feels familiar. I don't know how to stop trying to go back to who I was, what I did, what I believed, what I wanted, devoting my time in the ways I did, with whom, in what activities- all of it. That terrain is supposed to feel familiar, like home, and in so many ways, it doesn't.

That doesn't mean that it's bad or wrong or that I'm quitting or running away, or stopping talking to people or anything of that sort- I am just in the midst of figuring out that I can't do things the way I did them before, and I'm not sure why, I just know that I can't. And I don't know exactly where I'm supposed to go with that information.

That moment when you realize you've been walking past all the shops for so long and dreamily staring into the windows, until you noticed that you no longer recognize where you are- sitting on the steps, looking around, not sure which direction to go in order to find something familiar - that's me.

My husband feels deeply familiar, and in new ways. Whatever it was that tied us together has been plied with new experiences and while we do exist as two people, there are so many ways that I feel that we are one- in healthy, empowering ways. If every experience shapes us, what does sharing a life with someone do to us? Who would we be without that experience? I don't have to see myself as incomplete without him to know that I would be, the person I am today, incomplete, without him. It all makes sense, even though it doesn't.

I'm so grateful to live in a home where it feels familiar, and where I can spiritually and emotionally sort of throw myself around and try on different ways of being me, without it disrupting our home - mainly because it's probably all my family knows of me. ;) It's our normal, I think.

In the meantime, in the external world, I'm forgetting commitments, double booking my time, standing people up for work appointments, showing up late, forgetting things. It isn't that I don't care, because I care very much- but there is some place in my brain where the only thing I have space for is THIS moment, and the future is not in it. Therefore it doesn't exist, and therefore I can't think about it. I don't know how to shift this weird, slow place I'm in, except to notice that I"m not ready to swim. I'm not ready to try to dive back into an old life that died. I have to step away from it and venture forth and consciously choose who I am with every step, in a different way than I did before.

It takes a lot of energy, birthing oneself. I nap a lot, or wish I could. I think a lot. I am experiencing things intuitively in a new way and every new thing startles me.

I think I'm going so slowly, and then I realize that I can slow down even more.

Wednesday, August 1, 2012

Still landing

One of the midwives I work with called tonight to ask if I'd be ready to assist at births again any time soon (as in, immediately lol), or in the foreseeable future. This is something I've been mulling on, this, and many other things. When will I be ready to go back to work? At some point, do I just call it on the calendar and jump back in, sink or swim? I can't just 'sink' when I'm at a birth, too much responsibility. But how will I know if I'm ready if I don't dive in? Why do I feel so resistant?

I think a lot of it is that going to births requires such a huge amount of energy from me and I feel like right now, I am spiraling deeply inward, not outward. I want to cancel plans, not make them. I want to stay home, not go out, keep silent, listen, process, assess, write, analyze, think, reflect. I want to be a tree, I guess.

My aunt told me at one point that having cancer has changed me. I didn't realize that until she'd said it and as I move further away from having had cancer, it starts to feel so very long ago, another lifetime. I don't recognize the person I was before it because she feels quite different than who I am right now. I'm sure, six weeks from now, I will say the same thing because the change seems to be happening so darn quickly. I feel like I need to continue to cocoon myself for a while longer, and am curiously wondering who and what I will be when I come out. I really have no idea.

Taking out the cancer wasn't the end of the story. I don't know when it will end. I wonder about writing here 'still' when I don't have a cancer story anymore. I wonder if anyone feels as strongly or responds to it or if it makes a difference - and even though I don't have answers, I still come back and write. The difference it makes, I think, is that it helps me, and that is the most important thing it can do, at the end of the day.

I am still working through some things about my cancer experience that lack explanation- and I am unclear how to talk about them without possibly hurting people, but not sure how to process it without writing it out, because I've done all the talking I can do, and I am still hurting over it. Until I find a way, I feel stuck with this energy and it comes up in my thought processes all the time. I'm still chewing on it, trying to find the spot that will give way.

I'm so glad that the midwife called today, I hadn't realized until she asked me basically if I'm ready to 'get back to my old life' that I'm still trying to land in this new one. I don't know another way to describe it. I've gone through deeper changes than I ever expected or even knew I could, and I'm still finding out who I am on this side of it.

Monday, July 30, 2012

Full stop

"What's my destiny, mama?" -- Forrest Gump

I don't know what mine is, I realized this weekend. I live a lot in the future. I think about what it will be like to be a midwife, or to die. I think about what it will feel like in random scenarios that will likely never happen.

I think it's a fine distraction from what I'm feeling right now, in any given moment. I still don't know how to feel things *right now*, very well, at least.. that's my thought in this moment.

The trip this weekend was a deep, deep river that words will only make shallow, and tidy. I am not ready to write about my trip to the Redwoods and the things that happened, inside me and outside me as well, but I will say a few things -

- I am learning that I intellectualize my feelings a lot as a very effective defense mechanism. This comes up time and time and time again and is a 'hot' issue for me right now. I immediately process why, how, the other side, and I do my very best to skip over the feelings all together.

As a result, this blog is evidence, I feel like I have a lot of feelings about having had cancer that I did not name, or sit with. I don't need to relive the whole thing (or do I? I don't know... that's a good question- is that just going back to my regular defense mechanism? Hmm...) but I want to move forward in better awareness of what I'm feeling and letting that just be. No thinking about it, rationalizing or judging it. There are no 'bad' feelings, just uncomfortable ones- and I know this, and I need to just let myself be uncomfortable more often. Thank you, cancer-teacher.

- There were three mosquitos during my entire trip from Thursday night until 3:30am this morning when I arrived home. Three.

-  As I was packing for my trip I was sitting in the front seat of the van and this dark shadow passed over the windshield. I thought, holy moly that was like a movie! I hopped out of the van and looked up and there was a single hawk right above me that was slowly spiraling up, and up, and up. It didn't go wide, it just stayed right there but went higher, and higher. I've never seen a hawk around my house before. There were probably 40 hawks on the trip, we saw hawks constantly.

- Campground (KOA in Crescent City if you care) was absolutely perfect. I was worried when I pulled up by how busy it looked but I had paid for a tent space (no regrets!) and it was totally surrounded by redwoods and huge stumps, so we had privacy and quiet even though the grounds were totally full.

- Serendipity abounded during this trip. I can't even give examples, but all along the way we felt incredibly touched by Spirit and blessed in our journey- everything just consistently worked out even when it seemed like it wouldn't.

That's all I'm saying for now. I'm trying to slip back into the stream of my regular life, at least a little bit, so that I can function. More words later.

Thursday, July 26, 2012


I'm working on getting to see my wonderful OB/GYN to start talking about a baseline of information on my ovaries. Every time I think about my ovaries, they get this pinchy sensation that feels like "YES! Me!!" I'm just listening and going to get my team together to make sure that nothing nefarious is going on with those little suckers.

I'm sort of in this middle world where people still are uncomfortable with the whole 'cancer' conversation but we're on ground that feels much safer. It's much easier to talk to someone about cancer when it's not currently growing inside of them, right? I don't have judgments about it, it's just interesting to watch how other people react to my experience (and isn't that all of life, anyway? Having experiences and reacting to them?)

What I don't like, deep inside me, is that when people act sort of relieved that we don't have to have the 'oh that's too bad!' conversation, that I feel like the sum of the experience I had is inconsequential. It's not that I need any one to do anything different, I'd so much rather people are real in their reactions and exchanges with me (fake is awkward.) "Oh, it was just thyroid cancer, well that's good."

I just want to invite people who are reading that if you are uncomfortable in a situation, like meeting someone who has cancer, try asking really broad questions. "How are you feeling about that?" is a pretty good fall back question and I ask it probably daily to people I meet/interface with. Don't assume that just because you think you would feel a certain way about it, that's how I feel- just ask me! When I ask this question, I'm genuinely curious to know their experience, because I'm not trying to cope with mine, in that moment. It's okay to be uncomfortable, it's how we grow.

I am grateful to those folks who encouraged me to just make the call to my GYN, he's a great guy and I know he'll help me figure out a good route to take. I had asked for the CA-125 test and he's not a fan of it, so we're going to get together and talk about some other possible options. I don't think I have cancer, but my mother lost her ovaries at 25 and I really have no idea if any kind of cancer runs in my family- and given the amount of noise my ovaries have made over the course of my life it feels prudent to be on top of it.

Liz asked if I thought I'd need more, and more, and more testing as I go- and I had to really sit with that because I can see where someone might go in that direction. I don't land on 'anxious' about too many things and I feel like if I can check into it now, and if nothing's going on, create a baseline to work from, that's all I really need to do. I'll keep in the loop with my doc and maybe have checks when I have physicals or even annually, but I'm not going to fuss about this and demand scans I don't need and wrack up a bunch of stress and worry.

There is a 5K run that I am thinking I'd like to try to do- it falls two days before I leave for Shanti so I don't know that it's something that's realistic but I've never done anything like this before so what do I know about what's realistic? I know that it's a cause that's important to me (child trafficking) and I've been thinking about how I could realistically get started on an exercise program. Left to my own devices, my old patterns, it will never happen. I'll talk with my friend who is also training right now and see what her advice is.

A lot of stuff around my family relationships is coming up now finally, which is a lot of what I think this whole cancer thing was about- and it's interesting the movements that are happening when I felt very frozen before. All of my life I've felt (and really, been identified) as 'different' to my family. The whole 'black sheep' thing, which is fine- I am different, I live my life a different way, have very different values, whatever. I'm growing okay with that feeling of separation. Due to a lot of things, I also felt like I wasn't important to my family, and I am still working through those feelings. I had gone back and forth wondering if I should continue to try to pursue connection with my family and throwing myself up against this giant wall of expectations and demands without ever telling anyone that my feelings were desperately hurt, that I felt alone, that I was angry and felt abandoned and unimportant to them.

As I was moving through cancer, I started just talking to a few people and that felt exactly right. I was isolating myself, determining how other people felt about me without ever asking them, and while I do try to be as available as I can, life doesn't make it easy for me to be close with anyone in the family, really.

Add to this the intense drama I've been going through with my mother, and how insanely difficult and ridiculous that has been, and I've felt that I didn't get to have a 'family' like some other people do, that I was just going to have to wing this life on my own, pretty much.

I set some good boundaries for myself with regard to my extended family but what I wasn't doing was just reaching out, from one person to another, and sharing heart to heart. Cancer got me talking, I realized that it doesn't have to be all or nothing. I am excited that I get to spend time with cousins that I love SO dearly and who I have really missed in my life. This isn't the end of the story, there is still so much junk to work out and I seriously need some therapy to wade through it all. In the meantime, I can have a place where it's easy- where it's just people who love each other spending time together without it meaning anything more than that - we just dig each other and it's fun to be together so we're doing it. I love it, and it makes my heart really full.

With regard to my mother, I had an intense and empowering conversation with her where I told her that I really need her to fight for me, fight for our relationship. I've been carrying it on my shoulders and taking care of her since I was a little kid and I am done with that- if she wants me in her life, she'll have to fight for me. I'm HER kid, not the other way around. I don't need to set down deadlines, or "You must do this or else" type of ultimatums. I just need her to take risks, be challenged, try hard, and do those things in a direction of wellness, and health, and wholeness, rather than drugs, and destruction, and manipulation. I'm almost 36 years old- I'm over it.

The reason I'm sharing these eensy weensy little windows into these very personal areas of my life are because this is the land that cancer came and tilled up. During that process of having cancer, new ways of seeing, relating, choosing, being- all tilled up from underneath the hard packed earth of my heart that historically, I only knew how to keep stamping my foot on in frustration. Cancer showed me the beauty of what's underneath and it looks an smells so good, I want to keep digging.

I want these fundamental human relationships in my life to just be easier, and for my heart not to hurt quite so much. I want experiences with my family that are delicious, and recent. More than anything, I want to feel seen, and valued, and important to my family, willing to risk things for. I have to continue do that for them, too.

I feel like this is a good start and I'm grateful that I could finally move all this intense energy in a direction that feels healthy and rewarding.

Friday, July 20, 2012

Thunder and lightning.

I haven't written in a bit. I have wanted to, but I'm just working through some stuff. I feel like I'm surrounded right now by this little cloud, and every once in a while this lightning bolt hits me and I scream, "I HAD CANCER!" and then the thunder rolls over me and I fall to the ground because I'm still all smoky and shocked.

I'm still shocked.

Suddenly the crisis part is over and I am left singed and changed. I am still absolutely shocked that I had cancer, and saying it doesn't diminish the power of it. I've been saying it for weeks. I feel it very differently today than I did when this started.

I really thought that with my first blog post that I'd be able to keep this light and funny, that I'd show that cancer doesn't have to be terrible. I actually think I have done that, and not because I kept to my intention but because it truly wasn't terrible.

But in some ways, it's utterly terrible. Utterly, deeply terrible. I think that's finally hitting me now, that I'm 'safe', on the other side of it. I can safely freak out because I don't have to focus now on getting through another test, or worrying about test results. Now there's all this left over room inside me and what I'm discovering is filling those little divots is shock, and ... I don't know the other words yet.

I worry about my ovaries and I want to just be tested now for cancer. My whole pelvis carries my trauma and stress (when I get stressed, my whole pelvis clenches up, for example). I don't like to be touched, my pelvis is often sore or wonky - it's just where I hold things. (Which makes sense, it's the cradle of life!)

My womanly bits all live within my pelvis and I've had a lot of problem with it since I was 15 years old. I won't get all into it given the mixed nature of this audience but I had a benign tumor removed from my right ovary in 2002. Now I've had cancer, and I'm doubly scared that maybe something is down there that I just don't know about. Sometimes being well tuned in to your body is difficult, it would be nice to have some silence now and then. I am not a hypochondriac, I don't worry unnecessarily that I'm sick or dying or whatever - but this feels really important and serious to me and it adds to the shock of "Holy shit, I had CANCER." Real, actual cancer. Not 'pre-cancer'. Not "could become cancer". Not "a chance of cancer". Actual cancer, inside me, Kristina, ME.

I'm still shocked.

Now I get to figure out who I am as someone who has "had" cancer. I want to go to my GYN and ask him for a blood test for cancer because then at least I can breathe for a while. How do I ask for that? How do I convince him? I have no doubt that I really need to do this for myself, for my piece of mind, and I feel like a damn crazy person, I feel like it doesn't make sense to anyone but me which makes me feel like it shouldn't make sense to me at all.

I feel like I've just broken up with someone and keep finding their goddamn crap all over my house.

Sunday, July 15, 2012


I'd say that I'm feeling better every day, even still. I don't know what it's taking me so long to recover from but I do not feel yet that I'm at 100% - which is okay, because the progress continues to be steady. I'm not down about it, I am grateful that I have a body that likes healing.

The next thing I need to do is get blood work done so that I can see what my thyroid levels are, calcium and Vitamin D while I'm at it. I'm starting to struggle with the daily routine of taking pills- I'm definitely at that point where the novelty of a new routine wears off and the old habits start to show themselves. I need to keep my medication out where I walk past it/see it, otherwise I never even think about it. I missed one dose so far, and was late on another, but I can feel the disconnect and I know that I'm likely to keep forgetting if I don't take some measures to make sure that I'm reminded daily.

I feel like my levels are good for the most part. I am still pretty tired but I think if I can start going to bed at a decent hour every now and then it might really help. I want to start integrating some kind of regular, low impact exercise without making a big fuss about it- just start doing something and see where it goes. No goals, just having it actually happen will be enough of a success. It feels like it's really important to make this happen and I hope that I am relaxed enough to let myself do it and enjoy it, but on top of it enough to stick it out. I guess I need to make some daily-routine changes all around.

I've said many times that this cancer is energetic- I do believe this, that it wasn't here to kill me necessarily, but more serve as a warning system that I need to open up, pay attention, speak up and make some changes.

It's just been such an intense few months and the last couple of days I've felt the culmination of all of that intense outpouring of energy, of being cornered by circumstances into receiving generous love from others in ways I never would have allowed myself otherwise - and the energetic transition is just starting to wear me down or something. Today I dont' want to be touched and I'm prickly, a little sad and disconnected, but at the same time feeling really positive and I actually got a LOT of work done today. It's a weird place to be, all conflicted and turned upside down, but it's just where I'm at.

Today Randy and I were listening to NPR and the Tobolowsky Files were on, and Stephen Tobolowsky was talking about his experience with his heart surgery. He painted the exact picture in his story of what it felt like to be me, going through cancer and surgery and healing and everything that we have so far. It was a profound thing to listen to, that other people do go about this journey in many of the same ways that I do- in consciousness that this changes us, that it changes our bodies profoundly, forever, that it changes how we love ourselves and others, and what we say about that love. My friend Kelli had a laparoscopy and it was also profoundly life changing for her- a 'little' surgery, but it cuts us each to the meat and bones of who we really are and makes us naked in ways we'd never expect (because we are willing to be naked).

I felt like I was holding Stephen's hand as he told his story, getting obviously emotional as he described his wife and her support of him, much in the same way that Randy has unwaveringly supported me. "We'll do whatever we have to do. We'll get through this." It's true. We will.

He talked about a story in the Talmud about how Death visits us many times in our lives and we don't notice until He's finally staring us in the face- and then we realize that we've done this dance before, in some moment when we might have lost our lives to that car accident, or illness.

What I think we as a culture don't know is that Death is with us in other ways too- when we change, never to go back to who we were. When I moved out of my mother's crazy house and in with my Aunt. When I moved to Germany, when I came home. When I had my first child. When I had my cesarean, when I had cancer- all of these, they are all deaths- because I died in each of those moments, shed that molty flaky skin of who I was, and I birthed myself again, new and shiny and pink, and in that, also delicate and easily bruised for a while.

I feel like I am still in the 'death' phase of this, that parts of me are still shedding away and peeling back. I feel like I am still between the lines, between the veils of life and Spirit. I don't feel like my feet are on the ground yet and I'm not sure I'll know they are when I finally land.

It's frustrating, and delicious, and perfect.

Saturday, July 14, 2012

Knocked down

I'm feeling a little bit knocked down, and pulled apart. It just seems like I'm moving from one intense thing to another and it all started on February 17th when I saw that little tumor on my ultrasound screen. It doesn't even matter what all of these things are, but yesterday it just really hit me that it's been intense, dude. Intense.

I don't even know what to say. I feel like I'm molting. Old, dead, flaky me is falling away, and new skin is emerging. I feel resistant about this, and it's going to happen anyway. /sigh

Last night on my way home I parked and watched lightning strike every 3-5 seconds for about 10 minutes before I drove the rest of the way home. It was so beautiful, the lightning was striking behind the clouds so you couldn't see the bolts, but it back-lit the beautiful clouds in this incredible way. I feel the same way, that the strikes in my life are not something you'd see on the surface but that in some way I am revealed by them in a way I'd never expect.

The trees are calling- my trip to the Redwoods is coming up and I can think of no better place to go, rest, Medicine Walk, and feel the ground beneath my feet again.

Thursday, July 12, 2012

Still in the ripples

The times that it pops up are rather infrequent now, which is nice in some ways- long periods of peace, of life just going on. Then suddenly I see something that reminds me that I had cancer.

I didn't expect to still be grieving this loss after being cured. It makes me wonder if I really grieved it when it was happening but I know (and have documented) that I was as in the moment as I could humanly be, all along the way. I never side stepped it, or shoved it down, or pretended I was okay when I wasn't - so that means that this is just the normal for me to process that I had cancer.

Last night I was reading a story where a teenage girl falls in love- and in the middle of her love story she finds out that her mom is battling to manage lung cancer that is no longer treatable. The story isn't a spectacular thriller, I read the whole thing in one day. It was a sweet love story that was just fun to read, but this particular part of the story was particularly difficult because I had to tell my kids that I had cancer. I went in thinking that it would change their world forever, and who knows- maybe it did. I didn't know what to expect from them but I was prepared for a lot of tears, fear and sadness. I didn't get it, which is great- truly, truly great, but when you have that moment ahead of you, it's scary and overwhelming. So as I'm reading about this mother telling her passionate, head strong daughter that she was going to die of lung cancer, it hit me deeply that I shared something powerful with her and with anyone else who has had to break the news of a serious illness to people they love. I sat in the bathtub and read the story and cried my eyeliner right off my face.

I didn't give it a lot of thought, I had cancer, dude, it's sure to pop up, right? I figured it's just part of the process and forgot about it. I had a great, busy day with friends and thai food, my family and delicious birthday barbecue dinner for my husband. We went to the store after dinner and a woman walked by with a scarf on her bald head and this huge lump formed in my stomach, and I smiled at her realizing that she has no idea that I know some piece of what she's going through, even if small- and then it really hit me - I had cancer, dude. Cancer!

I walked around for 35 years thinking that it was something that could happen, but probably wouldn't happen, to me. It actually really happened. I had a surgery and procedures, I had to worry about my death. I had to tell my kids, I had to surrender to the help of my friends.

There's no way to type it out on a screen and be able to translate the exquisite, acute experience that this has been. I think on some level I am still in shock- especially after it is over so quickly. I don't feel relieved yet as much as I do feel like I'm still trying to organize the whole experience in the file cabinet of my mind, my life. Where does this weird folder fit?

Wednesday, July 11, 2012

Post-op appointment

What a wild day, for many reasons. My post-op appointment was supposed to be the major event for the day, and turns out it was the most mundane thing that happened today.

Let me get to it.

We met with Dr. Harper today for my post-op. I really do like her a lot, I wish we had more occasion to work together besides her desire to cut people's body open and my desire to stay intact. We just chatted a bit about our experiences since the surgery and outlined a few areas where things could have gone better. She said she'd talk with the people involved herself and make some adjustments- that's just what you want to hear when you have valid issues, you want to hear there is going to be action!

She was really positive about my healing, and said that my calcium levels in the ER would have been normal or they'd have alerted us to them. I had reviewed my lab values myself and they were all within normal ranges, so my parathyroids must be healing nicely and doing their job! We have some new labs ordered to see how I'm adjusting to my medication and how my Vitamin D is doing now that I'm taking it more often, I'll do those before I leave for the Redwoods.

She was surprised to hear my voice still sounding so high, and hoarse, and to hear that I'm still having 'breathy' issues. I run out of breath while talking, I get winded very fast, etc. This is all due to a probably paralyzed or sluggish vocal cord. She said to give it a month from now and if it's not better, that she'd refer me to an ENT (Ear-Nose-Throat) doc and we'd talk about possible treatments, the most fun one being to put me asleep and inject some kind of stuff into my paralyzed cord to bring it back to a normal size/whatever so it would function properly. Oooh. That sounds fun.

Tonight I thought, hey, would I rather have a needle down my throat or radiation? I'll take a needle in my throat, thank you.

I was thinking about the pre-op photo I took of my neck, and how I was very in the moment with my feelings, and acknowledging that I would never look the same. I am still trying to get used to this scar, and what it does to my neck. I was at a farmer's market recently and a kid straight up asked me, "Did you have surgery?"I was really glad he asked me so directly and we could just talk, rather than having him stare at my neck like I was Frankenstein's daughter or something. I plan to concoct some kind of awesome story to explain my scar. So far all I've got is, "I was in a knife fight and someone stole my thyroid." It's cool, but doesn't have enough.. I don't know... panache. I'm accepting ideas. ;)

I think in some ways this whole cancer thing is still hitting me. It started and ended so fast, I sometimes still think to myself, "Holy crap, I had CANCER." Cancer? Seriously? *ME?* How in the world did that even happen?

Randy and I were talking today about how I fought cancer and won. I admitted that I don't feel like I did anything more than what was required of me to survive. You get hungry, you eat. You get cancer, you get treatment. Done, and done. It didn't require a whole lot of mental acrobatics to understand my treatment, I just had to do it. It was hard, harder than anyone told me it would be- but it wasn't a fight, it was more like a surrender. I had to surrender to having cancer so that I could survive it, if that makes sense. I had to let go of expectations about what my life was going to be, and accept a new reality, and give in to what was scary and hard. By surrendering, I won the fight. Weird, but that's how it's done I guess.

Monday, July 9, 2012


I'm feeling recovered from my fever for the most part- I am pretty pooped right now and I don't know if it's from my surgery recovery, which come on, should be well behind me now, or recovering from the intense fever I had, or what.

I still run out of breath so fast and I don't know what that's about, if it's normal or what. I need to go to Seattle on Wednesday for my post-op appointment so it's one of the things I'll be asking about for sure. My voice is still making steady, albeit slow progress every day. I sound more like myself today than I did yesterday, especially if I keep my yap shut for an hour or two before I talk.

This morning I woke up to no kids in the house, husband gone to work - just me and my cat, waking up together in the morning sun. I had this burst of inspiration to go shopping so I did, which is something I don't do often as I'm generally struggling to feel successful in what I purchase. Today I tried on seven things, and I bought all seven things. Dude, that's a 100% success rate!

While I was driving around doing my errands I just had this sudden realization that I am free from the heaviest burden of cancer - getting treated, pursuing being cured of it. My fever is over and today, I felt good, alive, breathing, free of stress. I realized that I hadn't felt *contentment* in a long time. I haven't felt the feeling of just being satisfied with what I am, who I am, what I have, what my life is- in a while.

I think that feeling was tucked away as soon as I knew that I could possibly have cancer, which started on February 17th when the ultrasound tech left the image of my thyroid up on the screen as she went to review my films with the radiologist, and I saw that little nugget of mystery staring at me.

I generally feel content with my life. I have amazing, inspiring relationships with my friends, with my kids and husband and the people I work with. Deep rivers of love run through my life. I don't want for much at all in any deep way. I have what I need and crave.

Suddenly though, I was distracted by this little detour my life seemed to be taking and rather than controlling my life, rather than choosing for myself where I wanted to focus, I had to let go of things that I love doing. I had to think about giving up things that I was planning for the future. I had to imagine my death, rather than my long life.

There is no contentment in that place, at least, there wasn't for me. I'm sure there could have been, if I'd realized it and worked to get to that frame of mind, but it wasn't on my radar in the moment. Today when it hit me that I am indeed content, I felt a tremendous gratitude wash over me. I get to live, at least today! I get to imagine my future again the way I want, rather than having to make more sacrifices for something that I never wanted to accomodate.

It is a relief to be awash in gratitude, and contentment.

Sunday, July 8, 2012

Secret Club

I'm still adjusting to this new regimin of taking drugs every day. In the past I would have lofty goals of taking vitamins daily and it would last for a couple of weeks and then I'd skip one day and then that was it- done. Thyroid replacement is something I have to take every day- it won't hurt me if I skip one or two days, but why put any stress on my body when it's 100% in my control? So every morning I take my pill and calcium, and now will add Vitamin D to my daily routine as well. That should make my family practice doc happy, she's been bugging me about my Vitamin D level for a couple of years now.

Yesterday I woke up at 5:30 and I had a little bit of a chill, and I just knew I had a fever. I went back to sleep for an hour and when I woke up again (stupid fever sleep!) I took my temperature and sure enough- 99.5. I was a little bewildered, I felt totally fine otherwise. I ended up not getting to do henna at the event I was scheduled for yesterday which is always such a huge disappointment, but I was grateful to be able to make that choice and just stay in bed. Through the day I was quite tired and the fever was getting higher. Randy and I took a nap and when I woke up it was 102.5 and I was weak and sore and kind of out of it. We went to Urgent Care because of the fever combined with a recent surgery- just to be safe, and they sent us to the ER.

Great, the ER! Well the short story is that they don't know why I have a fever. My tests are all normal and happy, and I feel totally fine otherwise. I have an appetite, I'm going to the bathroom just fine - I'm just tired with a fever. Odd.

In the course of my tests I had to have a chest x-ray. After you have cancer, x-rays take on a whole new meaning. Suddenly I just felt very nervous and wanted to say no. The tech who was assisting me was walking me into the room when I said, "I just had cancer, I'm scared to have an x-ray." He looked at my neck and said, "What kind did you have?" I told him, papillary carcinoma with follicular variant.

He pulled down the front of his shirt to show me his scar - Hurthle cell carcinoma. He was so warm and kind and we talked about his radiation treatments and what I went through as far as my treatment. There was no comparison- "I had it worse than you!", it was just two people on a similar journey telling our stories. He had cancer and he did x-rays on people all day. It just made me feel better about having it done and as we walked down the hallway, slowly so we could keep talking, I felt.... relieved? I felt connected to someone who knew what it was like to have this particular experience (in his own way). I wanted to hug him. I felt like I had just been invited to join a secret club of survivors, rather than sort of winging it out here on my own, at the edges of a community that I really don't understand.

I never had thyroid issues, so I'm not educated about this world. I don't want to become an expert on my thyroid/drugs/etc. unless I have to, and right now, I don't have to.  Being able to talk to someone about my experience, rather than my lab results, was very healing for me, and the man was a ray of light. Another angel in my path! Nothing can replace the human connection - especially not the internet.

Thursday, July 5, 2012


I did want to just talk again about the perceptions I gained from other people who have gone through this surgery and what my experience has actually been like.

I knew there was a range of rebound time- everyone heals at a different rate of speed. What was very comforting to me before I had the surgery turned out to be one of my biggest frustrations because I made decisions based on the story that other people experienced this surgery, by and large, as pretty darn easy.

In some ways I can see that- I'm not hobbled from a knee surgery, I wasn't denied food like with an abdominal surgery. I am not limited in range of motion from a limb or back surgery. In those respects, if I had to compare, then yes, this was a quite easy surgery.

If I had to tell someone who has only had very limited or no surgical experiences what to expect, I would not have been so quick to be so reassuring- not because I am cruel, but because I just don't think it's realistic and honest. There is more to healing than whether you can drive your car and go back to work. Maybe that's not true for everyone? It is very true for me. I feel like I have stepped off of a rocky ship onto new land that is relatively familiar but just different enough that I keep wondering if I really did land somewhere other than home.

We were told by the person scheduling our surgery that our surgeon felt that if we had the surgery on Friday, Randy should be able to comfortably go out of town on the following Tuesday. We made our decision to have the surgery when we did based on that information, largely, or we would have waited until later after Randy's trip and he was able to be home with me for the initial recovery period (the first week?)

If I hadn't had the incredible support of my friends, I honestly do not know what I would have done. I couldn't cook. I had to sleep very still, sitting up, and I was terribly constipated. My range of motion was limited and I was taking 400mg of ibuprofen every 4 hours around the clock, without fail, to manage pain. I couldn't talk, I couldn't get my brains together to think through simple things, and I ran out of energy very fast.

My friends brought me fully cooked meals with all the fixins, they took Eidie so that I could rest. My older kids did a really good job of working together, of taking care of Eidie, and of facing disappointment when things we thought we'd be able to do didn't pan out without complaining too much. There are no better friends on this planet than the ones I have. 

I'm now almost two weeks post surgery and I still tire quickly and get sore. I don't need pain medication  anymore except for sporadically. I've adjusted to my medication so far pretty well and I'm feeling happy about that, and I'm also still working to remember to take it every day. (So far, I haven't forgotten for more than an hour or two!)

If I had a job, I could probably go back to work within the last couple of days, but not earlier than that. I will be working this weekend, doing henna at a festival, and I'm nervous that I am pushing this too soon but I also really want to see for myself if I'm ready to do it or not. Nothing says I can't pack up and leave if I get too tired. This big fat scar on my neck will afford me a little slack if I need it, I'm sure.

Last night I posted on Facebook about feeling like the surgeon took out a part of my brain and people shared that after having general anesthesia that it took weeks for them to feel like their faculties were fully returned. Why didn't I know this before hand?

I wish the anesthesiologist had met with me at any length before the surgery to tell me these things. Other than waking up and how that might feel, I had no idea that I might feel tired and foggy for days, weeks after my surgery.

In the moment I thought I had pretty good informed consent happening, and in retrospect I can see where a lot more could have been explained to me very simply.

Over all, I'm definitely getting better every day, and that is great! I feel like the core of my body is strong and eager to heal, and that there are reasons why it's going slowly that I have yet to uncover.


Last night I went into the bathroom and was just looking over my neck and I noticed that the area where we'd fussed with the tape had caused it to lift entirely, it was no longer sticking to my neck at all in that area. I considered trimming it but decided without a lot of thought to just pull it. It was kind of a gut move, really. Offffff zipped the tape, it wasn't super sticky anymore and came off easily and my neck-guts didn't fall out. Score!

Here's my incision as it looks at almost 24 hours without tape on it. Click on it to see it closer up. There is a bit of the tape goo left behind but the area is quite tender and I really don't want to touch or pick at it at all.  It also doesn't look this red in real life.

I went to sleep with just the thought in my mind that it might open up while I'm sleeping, and what would I do? Would I know? But that's just the post-surgical-crazy coming out and I knew that, so I went to sleep and while it was in my consciousness, it didn't bother me too much.

I had a dream that I can't remember now but I do recall that while I was dreaming it I was trying to understand it (I often sort out the meanings in my dreams as I'm having them which is handy!) This dream had something important for me to learn and I was trying to grasp it before I woke up but I don't know if I did or not.

Today I woke up feeling sad and vulnerable and emotional. I really think it has a direct relationship with the tape on my neck- I took away my 'protection' and those feelings are just there under the surface, raw and red like my neck. Today I also notice that my voice is not as strong as it was yesterday and I feel like I want to be quiet, and silent, and within.

It's interesting to me that I keep wondering if I'll reach a point soon where the 'cancer journey' has officially ended and I have nothing left to say about it, and then something completely unexpected pops up.

I also notice that I have this urge to keep the tape on because it explains so much without me having to say it- why I sound like Minnie Mouse, why my neck looks like I swallowed a dinner plate, why I'm tired, and foggy brained.

The incision looks so naked to me, it scares me. It's me, revealed, right where everyone can see it- changed forever.

Wednesday, July 4, 2012

12 days (one graphic photo)

I'm now 12 days post surgery. I want to say it went by fast, and it did in a way, and it's also been very slow. Randy hasn't been home a lot and so when he is here, I feel like I want to just touch and be with him all the time, run away alone together for coffee and talking and touching. Alas, no time for that just yet!

Looking at my kids, this whole thing seems like it never even happened. There was never a time they said they were worried or seemed worried, hovered, or were clingy or overly attentive. I didn't sense that this was a stressful time for them and it seems odd to me. Great, I am so relieved that what I thought it would be for them was not what it turned out to be, and I feel a little cheated of some of the benefits I think I should get- you know, less arguing, more offers of chores, someone to rub my feet... ya know, the perks. ;)

Yesterday we peeled the tape back on my incision a bit. I took a photo which I want to share because I think it's good information for people going through this to know what the incision might look like post operatively. The neck itself where the incision is is quite swollen still and I have a little 'shelf' there. It looks like I swallowed a disk and it got stuck in my throat. That swelling will continue to go down as the stitches inside my neck dissolve, and especially one the tape comes off and I'm able to massage that area (ewwwwwwww that squicks me out! but I'll do it).

The area itself is still quite tender and if I turn a certain way it pulls. Driving is fine but my seatbelt rubs right on the edge of my incision and that is really irritating. When I turn my head to the left or right, I turn to a certain point and then my whole body turns too because I think I'm still just quite protective of that area and don't want to put unnecessary strain on it. I feel really confident moving my body around otherwise though.

We decided to peel the tape back just to look at the incision and I'm glad we did just because it eased some anxieties I had about it, but also bummed that my wound did not knit neatly together in a sweet, thin line. It's got some dehiscence (splitting open of a surgical wound) going on which is not worrisome but it does mean that my scar won't be nicely hidden, it will be wider at least at the points we saw.

Ready for the photo? It's a little icky so just scroll down fast if you don't want to see!

You can click on it to see it closer up. ;)

If you have the courage to look closely at it you can see the surgical glue stuck to the tape and was pulled out of the wound when we pulled the tape back. We didn't pull it out, it wasn't sitting in there the way it should and my body just wasn't a fan of the glue or whatever. Looking again, you can see a small separation between the edges of the wound. It's not deeper than the layers of my skin but it will heal 'open' that way. It's too late to pull them back together and let them heal closed.

That's as far as we've pulled the tape off and now we're just leaving it alone completely. I do not have any signs of infection so other than the fact it's opened a bit, the only issue really is cosmetic as long as I don't develop an infection.

My voice is also at about 80% which is nice! I sound like myself again. Talking on the phone continues to be a real strain to my voice and talking for a long time still tires me. I don't know why, I think it has everything to do with how I am using my breath. I'm not sure the mechanics of that but I can feel myself run out of breath more often (less often than right after surgery, but still more than before surgery) and having to pause for a deep breath now and then because I get woozy. Maybe I'm just naturally woozy. ;)

As far as my thyroid replacement is concerned, I feel really normal and fine on the dosage I'm on so far. I don't now how long it would take for me to feel 'other' if my dosage is off (Levothyroxine), but right now I'm noticing that I am less tired every day, my appetite is okay, everything going in comes out fine, my heart doesn't race, my hair and skin feel nice and supple and not dry. 

While I'm curious about a more natural alternative to what I'm taking, I'm also fearful of experimenting when this is working so well, at least it seems to be right now.

Monday, July 2, 2012

Pathology report

Here are the bullet points of my pathology report, just to help anyone else who is going through this and reading my blog (or for the curious!)

1. TUMOR SIZE: 1.1 X 0.8 X 0.7 CM. 










They surveyed the crap out of my tissues and found no cancer, anywhere else. Just the one!

Sunday, July 1, 2012


Today I woke up with really mild pain- which is so great, what a success! Pain is taxing and tiring and I think as my pain winds down my energy level will hopefully level up a bit. I think I'm healing up really well, I didn't expect to be pain free right away.

I am accepting that my voice doesn't work just yet, and I'm finding a new way with it. I find that I choose to be silent a lot more often- I had small thoughts that I would struggle with not being able to 'speak', when I find that silence is just as informative oftentimes as speaking is. I had been really working on choosing when to speak long before I ever knew I had cancer- I quiet my thoughts and still my hand FAR more often than I speak out! It has been good to learn to let things develop in their own timeline without my encouragement or support or whatever I had to offer in the moment - what would happen if I said nothing? I ask myself that question a lot.

It feels like training for what I'm experiencing now, which is to physically not be able to verbally express my thoughts. I speak too much, it's a hard 'habit' to break, so I end up silenced by that because the lump swells in my throat and it's an uncomfortable reminder to keep silent.

The silence is quite liberating. I have had to get my kids to understand that I can only tell them something one time, and that I need them to listen right away. It gives me (more) time to choose my words and use them wisely, to ask other people to speak for me (which is something that is completely new to me, and probably most people I'd guess?).

Arguing is difficult and so I don't do it. I wait.

Singing is impossible. I try anyway. How can I not sing? Unfortunately while I had high hopes this surgery would correct whatever anatomical flaw prevents me from sounding like the Botticelli angel that I hear in my mind, alas.... the world will just have to suffer without my talents a while longer.

I feel like I'm on the leading edge of something important, that this is a necessary step in this journey. I told you this was not about my body, this was about my life - this cancer was teaching me something about my life, my Spirit. This is my Medicine Walk.

I'm doing my best to keep my heart curious and open, knowing that when the hard times come, that they are transient and to my ultimate benefit.

Friday, June 29, 2012

Two steps forward, one back

I feel this dance of one-step-forward, one-step-back happening since I got home from the hospital. I'll feel pretty okay for a couple of days, and then the third day is a whopper where I feel wiped out, emotional, sad... basically scorched out. In my mind I see a tree whose center has been burned by a great fire. It's still growing, but the center has just been made into charcoal. That is me, on days like this, or after births.

Today is a 'scorched tree' day.

It's wearing on me how hard it is to talk and interact with my family. My kids really have been supportive and great and even though you can't get through a day without squabbling children at some point, they've taken care of each other well and I am really grateful. I have been able to talk a bit with Randy (who comes home today, yay!) and that's been good. It feels good for him to see that I am improving daily, and it will be great to have his help when he gets back.

It's hard for me to talk for any length, I get this feeling of a giant lump pressing on my esophagus which is uncomfortable and distracting but not painful. At night I wake up and I'm sore and nauseas, but after I take my medication, I have a snack and I feel better. I have good energy on non scorched-tree days.

I just want to get into my comfy clothes and climb into my bed and sleep for a few hours. I don't know that it's going to happen today.

If the dance steps don't change, tomorrow I will feel a lot better. Keeping my eye on what's coming and not rushing what's happening now.

Dear Cancer

Dear Cancer,

We had a rocky beginning you and I. Looking back I think you had a plan for me, and until I was able to get on board and see it, I resisted and was afraid of the new life you required me to step into.

Our relationship broke me down from the bottom up- looking at myself in a very fundamental way, I questioned my identity as a human being in community with others, my very value in the world. I probed at wounds left unattended for a long time and found that they still weep and wait for Medicine. My inner-child even got a few visits as old patterns re-emerged and old pains resurfaced.

One thing that I have come to believe through this process is that we all have things to learn in this life- our life time, even if measured in moments, is a bounty of experiences that enrich us deeply before we let go of our heartbeats and worldly selves. We each learn at our own pace, and some people pick things up quickly (maybe many iterations of themSelves already been here and the lessons familiar?). Some resist and struggle and learn in large bursts of intense experiences, and rail and question in between. Some people learn slowly- every lesson a chore and seemingly insurmountable and unfair to have to experience. All are right, all are the way they should be- none better than others.

I think for Healers, for people who have picked up the quicker lessons quickly, it takes something big to break us down. Healing and learning happen when we are broken down to our smallest (yet largest) selves, we suddenly begin to question things in a deeper way in order to survive the terrible pain and fear we're experiencing. We open ourselves up to new experiences, new ways of thinking.

One might say it is violent to till the earth- disrupting the smooth ground and all that lives beneath it for our own means. Tearing the bodies of roots and worms so that we might plant new things.

The tearing must happen, the ripping up of established thoughts, beliefs, and processes must happen, if we are going to plant the new seeds of who we are becoming.

This is what I believe our life experience is, at least a facet of it- we are torn open over and over so that our established ways of being might be broken and challenged to grow new directions in order to continue living, that we might recognize the things we no longer want to nurture and pluck them, and make room to plant new ways for ourselves.

Cancer, you have been a great gardener. You came into my life at just the right time (of course), and eased me into the idea that we might have a dance to do. I did not have to suddenly find out I had cancer, I had time to dip into that idea before I knew for sure we'd be spending time together. I appreciate that.

I had to honestly imagine the darkness of telling my children that I might have some awful version of you, one that would end my physical life with them - and it was a dark time for me. I went deep into the Underworld, feeling terribly sad and lost but still anchored firmly in the realities of what was ahead, no matter what.

While I am glad that we are no longer together, I am not angry about you coming into my life- I never was. I felt heart broken, a deep heart break, sad and afraid of how I would let you fit into my life (worrying all the time that I would have to stop everything and make my whole life all about you, which thankfully, you didn't force me to do).

Rather, I feel tremendous gratitude. I knew from the beginning we were going to do great things together, that I would be deeper, enriched, and expanded because of you- and that has all been proven true.

My heart is softer. My ability to love myself with less judging is bigger. I feel less connected to "What I should do" and more connected to doing what feels right in the moment. I am open to seeing grace in situations where I couldn't afford to give it before. The constant chatter is quieter in my head, and I feel a tremendous sense of curiosity about all things that is so much bigger and deeper than it was before you came into my life.

I wonder, all the time. I just wonder about things. I am in my body more than I have ever been in my life. I am seeing through my eyes, and touching with my skin, and feeling all of those things instantly rather than having to dive down to find those sensations. I saw a tall, purple foxglove in a neighbor's yard the other day and it was so real, so here, and for once, so was I. I was the foxglove. For once, it feels safe to be in my body.

I don't want to say too much, wrapping words around what I'm experiencing puts some kind of limit around it and the experience is private and mine - but I wanted you to know that while it cost me a little, I feel that what I have given away to be here today, in this place of wonder and curiosity, and deep, unwavering LOVE, is a small price to pay.

Thank you for leaving quietly and leaving behind such an incredible impact in my life.

Wednesday, June 27, 2012

Holy crap what a day!

Well, this will take a bit of back tracking but it's a captivating story with a good ending so hang in there.

When I had my surgery on Friday, my surgeon stopped in and said that I have the follicular variant of papillary carcinoma. This basically doesn't mean much as far as a change in prognosis or treatment, so whoopdee doo. She said that when she went into my neck that the lymph nodes looked really good so rather than taking all on the right, and some on the left, she just took the right ones (nearest the tumor), and the whole thyroid.

In the midst of preparing for surgery I really considered about radiation, and after a chat with my endo and my surgeon I decided that if I don't have cancer in my lymph nodes, I wouldn't have radiation. She said that the lymph nodes she pulled out looked healthy but that we'd need the pathology report to know for sure. She said it would be in on Wednesday and I'd be able to just call to get those results. As she had come in on her day off, her partners would be around to care for me.

Fast forward to today- it was time to make the call to get my pathology results. I started to feel a little nervous- because I really really don't want radiation and I knew that would just be one more hard step in this journey that I didn't want to have to take. It started to hit me that I might actually have to say yes to it and I was just getting a little bit nervous about getting my results, and wishing Randy was home.

Now, my surgeon told me to call and get my results on Wednesday, so I called who I always call- my primary care doctor. I belong to a big HMO that is all interconnected, one huge network, so we're talking about every provider I see being able to see and interact with my entire medical record. Consulting nurses can see emails I've sent my providers, times I've opened my emails from them and viewed lab results online, the whole shebang. Fully automated. I'm told to call for results, I call my primary care doc, just like I always have for everything else.

I call and say that I am calling to find out the results of my pathology report, and the woman who answers basically says she's not able to tell me over the phone as she's not an RN or MD. She'll speak with the RN about it and call me back. Let me just say here that the ONLY time I have ever, ever, ever been put off from getting results right away, over the phone, or released to my online record, was when they were outside of normal limits, or flagged for some reason. So when she calls back and says that the RN doesn't feel comfortable giving the results over the phone, I freak the fuck right out. I explain to her that all I need to know is if they found cancer in my lymph nodes- I already know I had thyroid cancer, because as you can hear in my voice ma'am, I just had surgery FOR the cancer. She just said she was very sorry (in a scarily sympathetic voice) and that we'd set up a phone visit with my doctor at 3:30, which was 2.5 hours away. Okay... fine, I can stay busy till then.

But then my mind starts wandering of course, why wouldn't they just tell me over the phone if there's cancer? The only reason would be if there's another kind of cancer - one of the bad ones. Oh my god, it's one of the bad ones, and I only have months left to live! Oh my goodness I'm going to have to get chemo, how will we tell the kids? Wait, calm down.... breathe... there can be other possibilities that you aren't aware of, don't get crazy now... but whythehell did she sound so sympathetic? Was that like, "I'm so sorry you're going to die soon" sympathy or "I can't help you and I know you're upset" sympathy?

So, continue to spin until 3:15 when I get on Skype with Randy and we wait together for that phone to ring. 3:30 ticks by. 3:45. 4pm. 4:30. Now it's 5pm and I have people on my Facebook page threatening fire and pitchfork action if this doctor doesn't freaking call me, and urging me to just call them- so I finally did at about 5:15.

The woman who answers is a nurse who knows who I am personally, we've spoken many times, and she's always been super supportive, creative, calming and awesome. Today, not so much.

Me:  "I had a phone visit with Dr. B at 3:30, it's 5pm and I just haven't heard anything."

Her: "Oh, well... she does all her phone visits at the end of the day."

Me: {Mouth agape for a few seconds}... "Um, someone made an appointment for me at 3:30. I am not waiting for test results until the end of the day when I've already been sitting here for almost two hours expecting the phone to ring with my results. I've already been waiting since 1:00 this afternoon and put off, I am NOT going to wait any longer.

Her: "Well.. you've been her patient for a while, right?..."

Me: "Yes." (I'm getting really, really angry now.)

Her: "Well, you know how her appointments run........" (as in, they run long, and she's always, always running way behind because she takes her time with each patient).

Me: "I have been her patient a long time and I understand she runs late and that's fine, that's why I waited until 5pm to call. But now your'e telling me I need to hang up the phone and wait some more because she does her phone visits at the end of the day, and if that's true, why didn't someone tell me that? Why have I been waiting all day for these results? (I start getting hysterical) I NEED SOMEONE TO TELL ME MY RESULTS RIGHT NOW!! I NEED YOU TO FIND SOMEONE IN THAT CLINIC RIGHT NOW WHO CAN TELL ME THAT IF I HAVE ANOTHER KIND OF CANCER BECAUSE I'M SITTING HERE ALL DAY THINKING I'M GOING TO DIE. PLEASE.please.please.please.

(Meanwhile, I'm still sitting on Skype with Randy and he's watching this whole conversation go down. He mutes me and calls his mother (who is a manager at this HMO) and all I see is him raging an cussing and yelling into the phone, because he's watching me freak out and get no where.)

Her: {She's sounding now very uncomfortable and torn, she hears how desperate and upset I am and clearly wants to help but does NOT know what to do.} "Did you try calling your endocrinologist first? Aren't they the ones who ordered the test?"

Me: "Contrary to what you might think, no one gives you a GUIDE to cancer. No one tells you 'now all your questions should be focused to this person', and when I am told by my surgeon, who ordered the test, by the way, to 'call for results', I am going to do naturally what anyone else would do- I'm goin to call my freaking doctor! And if she's not the person I should be talking to about this the person who made my damn appointment should have TOLD ME THAT and not wasted my time! Now you FIND someone who can tell me my test results, I am not geting off this phone until I know what is going on!"

{This whole thing is scaring me to DEATH- the fact I'm getting this sort of weird run around has me even more fully worried that I have the really bad scary thyroid cancer that kills you in a year, and that's after you've bought time with chemo. Why else would they not say, "Lymph nodes looked fine!" I'm getting increasingly upset and angry and emotional and now I've decided that if she doesn't find someone immediately who is qualified to give me my results I will be driving down to the clinic and raising some H-E-double-hockey-sticks!!}

Her: "Hang on, hang on. She's in a patient room right now, I'll grab her and see if we can get her on the phone right away."


So the rest of the conversation was spent with my doctor who said that I'm a T1N0Mx. Uncoded, T=thyroid and the # = number of cancer, so I have T=thyroid, 1, N=nodes, 0, and M=distant metastases, x (because we didn't scan for that).

In shorthand, one growth in my thyroid, NONE in my lymph nodes!!!

I explained what happened to my doctor and she apologized profusely and said yes, anytime I have specific cancer questions to talk to my endocrinologist. I can always call her and she'll do her best to give me the info I need, but I'd be going a more direct route to call him directly. Thank you, doc!

At the end of the day it was a series of innocent follies that led to me freaking the heck out and Randy too - which also did make getting the news that much sweeter. The first person I called was my mom, who has felt very disconnected from this whole thing (which I am fine with, I'm not close to her) but she's been so worried considering her husband died of cancer a couple of years ago, I wanted to ease her mind right away. We both burst into tears when we talked and I was so grateful that I am eased of this.

I don't have cancer anymore. Done! Done.

I'm going to post this because the next post will be more about what I've learned, am learning- so much has changed in me because of this experience and I hesitate to write it all out just yet. I want to sit in it for a while first. :)

In the meantime- thank you for visiting, and farewell, cancer!