First Cancer support group today

Today I went to my first ever survivors of cancer group. First support group. I was nervous. I had Eidie with me and what if they didn't want a little kid there? I thought out all the scenarios. What if I cried- that would be fine, but what if someone else felt like they couldn't because she was there?

I started talking myself out of it. Maybe I should just go next time. It would be fine. My friend L, who invited me and whom I was meeting, would be fine without me. She'd understand.

I kept driving and found myself at the oncology office where the group is held. Oncology. That's not a word that strikes me, because I never worked with an oncologist. I met with my family practice doctor and my endocrinologist, but never spoke to a 'cancer doctor'. I feel cheated in some ways, that support would have made my cancer journey something so different. I feel bitter, that my cancer was relegated to 'unnecessary' to meet with someone as important as an oncologist. I feel relieved, that it was so common and easy that I didn't need an oncologist. Mostly, I feel jealous that I didn't get it. Yes, jealous.

When I'm awake I can taste 

how bitter I've become
And it's more than I can bear

I went to this group of beautiful women, all in separate stages of their cancer dance. One woman is just two weeks from her diagnosis. How is she holding herself up right, I ask myself. Then I remember that I kept working and living like there was nothing new, making room in my mind for the thoughts about cancer but never setting aside my schedule so that I could just.... what... have cancer? It's so funny how I expect other people to fall apart with a diagnosis like that but found no need to do so myself.

We talked about grief and I had a lot to say, but it didn't go the way I thought it would. I think I imagined that what I would get was reassuring, knowing nods, acknowledging sounds. I did not expect to be boldly challenged in my thinking, and in my process.

"Maybe you should..."
"Give this a try..."
"Maybe you're going about it this way so you don't have to..."

I realized today that I spend so much time analyzing myself that uninvited, it pisses me right off when other people presume to do it. I feel like I am the one who has the right to decide whether I want my actions, thoughts, motives to be questioned. But there I sat, trying hard not to close down, feeling the anger rise in my belly, struggling to keep my heart open- and all the while knowing that there was some profound truth they were speaking to me or I would not be reacting so.

So I stay too busy to feel things- so what. If you had to feel all the shit I have on deck, you'd find some menial chore to do too, and fast. I want to grieve on my terms. As in, I want to control it. I want to decide when to let go of control, I want to decide when to let it run over me, so that I can decide when to stand back up and dust myself off.

Instead, I drive down the road and think the craziest thoughts, ones I don't dare write because... I find myself worrying what the impact would be- would it worry someone? Hurt someone? Odd, for me, but there it is. I'll find the right words, but not today.

Sitting with perfect strangers looking at me, nodding in my direction as someone else who doesn't know me talks about the holes in my process was like being stripped naked on the side of the highway for all of the passersby to see.  This is something very new to me. I found myself unable to detach myself from this vulnerable, naked feeling, that I couldn't just decide who I wanted to be in this group but could only react, and catch up. It was really hard. I left there angry and enlightened, toying with never coming back, because fuck that shit and knowing at the same time that I'd never let myself off the hook that way. I sat there and thought, "I had cancer. I can do this."

The note transcribed reads:

Who are you to tell me what I should do to feel my grief? What do you know about me?

Sap rising with the anger and as I feel it, I know there is something daringly true about what she's saying. I hear her saying that I am resisting the slow pace of the process, of grief. I expect it to fit into the empty spaces between the edges of my busy, full life.

I am sitting in this room, and I am more naked- to myself - than I have been since I can remember. I find that I am bitter, I am angry. At you, and at you, and at me. I tell myself I will never come back here. I am not seen the way I like, the way I control, the way that is comfortable. The blankets are ripped away by the hands of other women's experiences and we are revealed, vulnerable. But we do not cover our nakedness from each other. 

I am brave and strong. Maybe this is the Medicine I need right now.

{Around the edge of the paper}

I want to feel it in categories, in little packets, like how I experienced it. I want to be finished fully with cancer before I walk through Africa. I want to enjoy my triumph before I delve into the death of my mother. I won't get it. 

Status: FUBAR

How can one person feel so many conflicting things at once and not break into little tiny shards of herself? I  don't understand it.

I realized a couple of days ago that I do not like my scar. I have to stop myself from saying that I actually hate my scar. I don't want to hate a part of myself. Yet, for some reason, I do. I realized it after looking at myself in the mirror, all dressed up, made up, earrings, hair- check, check, check. And then there is this wide scar across my neck that just mars the whole picture. When I wear something that covers it- a choker, a scarf, I feel comforted. I feel like I look normal. I hadn't realized those feelings consciously until a few days ago, and then it hit me- I fucking hate this scar.

Yesterday I was at the lab getting blood drawn. The tech drawing me said, "When did you have your surgery?" I told her, June. She showed me her scar, a thin, thin line in the hollow of the base of her throat. Barely there. You can't even see it unless you look. She said, "I had mine in August." I wanted to say, "Oh yeah? Good for you. Screw you." Instead I said, "It looks great."

I feel angry that this happened. Maybe I'm late. Maybe I am feeling the things I thought I was supposed to feel when I was still moving through it all. Why am I categorizing my feelings? I'm just feeling what I feel. RIght now, I don't understand this whole thing. Why did I have cancer, and why did my mom die? Why do I ask why? I know these answers but on the deep-inside-of-me, there is something in me that is SO MAD.

Today a song came on and it reminded me of my mom. I felt her sitting next to me, wanting to comfort me as I got more and more sad, and emotional, driving down the road. In my mind's eye I turned to my mother and punched and hit her.

I'm being confronted with how mad I am that she was never enough. Not that she needed to be, but I needed her to try to be, and she couldn't, and wouldn't. I hate asking WHY?! because it's a pointless endeavor, and yet I still want to beat her and hurt her and scream in her face, WHY WHY WHY?

I feel like I'm fucked up. I feel like I've been impaled on a giant drill bit that has routed out my very insides leaving me scarred and messy on the inside. And empty.

I don't understand how I can feel all of that, and feel the deep love I do for what I do. I don't undrstand how I can be that angry, and that on-edge, and still dream of my future, and what it will be like to be a midwife, to walk the halls of my midwifery school and think of the women who have made that journey before me. How can I feel such profound gratitude and be so humbled by the love of my husband - and of my kids- and be so sickened with anger, to feel so chaotic inside at the same time? I don't get it.

I have been feeling things in my neck lately and I am convinced it's just a body memory of where I was a year ago- with swollen lymph nodes and cancer growing inside of me. It felt like this. It was achy, and tender, and called my attention. This time, I don't want to go to the doctor. I don't want to have this conversation about cancer, I don't want to have someone touch my neck and try to reassure me. I Don't want to wonder if I'm okay, or if I'm down this rabbit hole again. I want to just set it aside for now. I really can't do anything more than that, I just can't. I have to set it aside for now.

Learning about trauma

I think on the heels of this year, I am traumatized. That sounds dramatic, but I mean it in a very down to earth, functional way. A broken bone is a trauma. A breaking of self - a trauma in the same sense.

This year... wow. I still lack the words to describe what 2012 was. Even encapsulating it to 'within a time frame' feels a little arrogant to me, as if I am daring the Gods to touch 2013 as well. As if, there is a beginning and an end that isn't framed just with birth and death. There is just living, there is just what we have to do each day. The only end is when we cease to be, and every day is a new chance for creation and destruction to arrive in our lives.

I saw a therapist a couple of times this year, once on either side of my trip to Africa. She was exactly what I think I've always wanted in a therapist, and I just can't prioritize it. I go in there and I feel so together, and I know I am not, in many, many ways. I am not together.

I am coming up on the 1-year anniversary of finding out something was wrong. Seeing that tumor on the screen and knowing that it might be something nefarious but not letting myself get scared just yet. How did I do that? It feels like a lifetime ago. Now I do get shaken in ways I didn't before. Lately I find myself looking in the mirror and wondering how being 36 shows up on my face, on my body. Having kids does change you in many ways, but what is aging doing? Why am I suddenly caring about that? I feel more beautiful now than I ever did in my entire life, but these last several days I find myself peering at myself in the mirror. Maybe at some level I know that I no longer recognize myself, and I'm looking again to find something familiar.

I went back and read a lot of this blog and how things went down. I like to write things after I've got some grasp of language for it, which is generally starting to slope down the back end of the experience. I feel like there is no back end to this. It doesn't feel like something that has a beginning and an end, like other things did.

The really interesting thing that inspired me to write was realizing that for the first time in my life and I'll I've experienced, I feel after this year that I've 'gone through' something of note. My life has always been just my life, just like yours is. People react to my story because it stands out to them in some way, but for me, it's just what I lived, there is no comparison to someone else's life (which is SO silly and pointless). But this  last year- a trip to the Redwoods, cancer, Africa, and my mother's death - this feels like I Went Through Something Hard.

In the middle of it all I could say, "It is what it is", and let go of attachment, just breathe in the moment and ride through it. Now I feel like, "WHAT?!" I still feel like I am in shock in many ways. I am meeting anxieties that are new. I am discovering ways of thinking that are strange to others, like the perpetual and constant focus on what will happen when I die, and wondering if it will happen today - will that car hit mine? Will a drunk driver swerve and hit me? Will an earthquake take us? What will happen if I am the only one who lives? What would happen if Randy had to live without me and one of our children, or two of them, or all of them? This is like a ticker tape running through my mind and it never seemed odd to me until I told someone and they were shocked. That made me think- maybe I'm having some anxieties because of What I Went Through. Seems normal, and reasonable.

Here I am, still trying to get my bearings. In many ways I don't recognize myself. In MOST ways, I don't. In precious ways I know myself, exactly who I am, but I feel like earth that has been turned over, the tearing of ways I used to be, now open and in the process of becoming who I am now, who I will be tomorrow. What if I don't like that person? I don't want to be a person who worries about growing old, and yet... I look in the mirror and I hunt for those signs. I know better, and feel silly. I tell myself, this is just a coping mechanism, it is just for now. It isn't drinking, or sleeping around, or doing drugs. It isn't lying, or vandalism. Wait- maybe it is, a little bit of vandalism on my own heart. Oh well. :)

At the end of the day, I am happy again. I am filled with gratitude at almost all times, I feel that these are the places where I recognize myself. I am bitter in some ways but it does not dominate my feelings. It's a secret dark closet where I hide the things I don't want to share with anyone - where I keep my alter ego who is wild, and reckless, and doesn't give a fuck about anyone, or anything, or herself. She is new, I don't know her well yet. Shadow. So many ways it arrives.

Still figuring myself out. Reading a book about trauma, and one about emotionally unavailable mothers. Not reading as much as, it's in my Kindle for when I get the inspiration to crack them. I'm tired of alway having to recover and heal myself from something. Maybe I just get to be churned up/fucked up/whatever for a while, and that's okay.

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.

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.

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.

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.