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.