Complicated: an addendum

Complikated is what I named this blog, because it’s life, and it’s me. It’s everything, really; nothing is ever simple, or what it seems.

Complicated now perfectly describes my mind’s relationship with my body. Am I strong or weak? Did I survive or surrender? Am I young or old? And does any of it matter?

It seems like this setback is about a miscarriage – although can I even call it that? I was three days attached to an idea, I’m not sure if that even qualifies. But that could just be me selling myself short, as I always do – my births don’t count because they were C-sections, my breast cancer doesn’t count because I only needed a lumpectomy and am now cancer-free. That latter is a topic for another blog, though, so let me return to the topic at hand. This is and isn’t about a lost pregnancy, or the idea of a lost pregnancy. That is what put me here, back inside a dark space, groping for answers that don’t seem to exist. I am grieving, yes, because as stupid as we knew it was, we were making plans. But that’s not the whole of it. Not nearly.

I am living inside a body I no longer feel connected to and that I do not understand. Before cancer, my period came reliably – every 26 days before birth control, every 28 days after. It was the same period every month, light, then heavier, then a day of nothing, then a final day. My skin always broke out the week before. I always thought I looked thinner when it was over. It only disappeared when I was pregnant and came back soon (too soon) after I was not. I knew the cramps. I knew the mood swings. I knew my body and what it was doing.

Then cancer. Why? Who can say. Too much milk as a kid. Years of birth control. Eighteen years of second hand smoke. Adverse Childhood Experiences.  A gene they have yet to identify. Dumb luck. But suddenly my body was a stranger. Some part of me had turned against itself and I didn’t know why or how. And to treat it, I had to abuse myself, first with surgery, then with poison, then with more poison. I had to make decisions based on data, not on what my body was telling me, because I could no longer trust my body. I COULD NO LONGER TRUST MY BODY. This body that has walked me through 39 years, two marriages, three pregnancies, two children, life, love, depression – it had been keeping secrets from me and I could no longer believe what it had to say. I could no longer assume fresh air and plenty of vegetables and walks in the woods were enough. I had to take up arms against my own body, and so I did.

I think I knew all the possible long-term effects. No, that’s not true, I didn’t. I didn’t know about tendinitis and IBS, two issues that now plague me post-chemo. I did know about the fertility issues, but I think I didn’t believe. So reliable, my period. Besides that ruptured tube, my fertility was a given. It was never could we have a third child; no, we were so naive, so oblivious to our privilege – it was would we, as in, did we want to. As though it would happen based upon our whims. As though we could control it. Even before chemo. Even after.

I feel myself growing long-winded and obscure now, so I will just stop meandering and get to the meat of the issue, which is that this is one more indication that my body still operates on a separate plane from my mind, that it is still unreliable and untrustworthy, a cage I now feel trapped in instead of a vehicle my spirit is at one with. Somehow my butterfly of a heart got it into its head that it was free, and in so doing, bashed itself against the walls of its cage until its wings were broken and the cage floor covered in dust. And so it is about the miscarriage, of course, but only because it brought my mind back down to earth, reminded it of who is in charge, that it should expect nothing joyous anymore from this deceptive shell.

I know this is dark, and I feel the need to apologize for that, but as I said, this has cast me back to a dark place. A slap across the face to bring me back to the reality of my situation, which is that I have survived, but only just, and that I cannot count on anything.

Missed Conceptions

Last month – May 9th, to be exact – I started spotting. It never got heavy, but it lasted for a full five days.

My oncologist said it was just my hormones trying to normalize. My gynecologist examined me and said there was nothing wrong and it could by my period or just hormonal spotting. Desperate to know if, after a year and a half, my body was finally normalizing, I took a digital ovulation test, which showed that yes, I was ovulating – on Julian’s birthday.

My “period” should have come back on or around the 4th – the 6th. I took several pregnancy tests, which all came back negative. On Conor’s third birthday, I took one that came back positive. Julian and I were both in shock, which, over the course of several days, morphed into excitement and joy.

Because my first pregnancy resulted in a ruptured tube, life-threatening internal bleeding, and emergency surgery, as soon as I discover I am pregnant I have to get two hCG tests two days apart. When a pregnancy is in the uterus, hCG levels roughly double every 48 hours. With ectopic pregnancies, hCG creeps up much more slowly. I had my hCG tested on Tuesday and it was very low, which was expected – I was only very newly pregnant. Yesterday, I inexplicably started getting a sinking feeling that I was not pregnant. Julian thought I was being crazy, but I felt sure there was some error – in spite of the positive home and blood tests – and I was not actually pregnant.

This morning I called to ask if that was possible, and the nurse called me back with my second hCG results. My hCG had stayed stable – not moved at all. She said that indicated that conception had occurred, but that for whatever reason, it had not developed or continued. She said I would get my period as normal, and could try again next month. I asked if there was any possibility that I was actually still menopausal, that perhaps it had been a false positive and I had never been pregnant at all. She said she didn’t think so, that menopause wouldn’t cause hCG to rise, and that very likely my body was ready and I should just keep trying.

I hung up with her and wept.

I have so many thoughts and they’re all jumbled so I’m just going to word vomit them here. I just had a miscarriage. I wonder if I conceived in the ruptured tube and then it traveled down and was not able to get to the uterus. Should we even try again? I’m kind of old. I thought this was a miracle. Is my body actually back to normal? I’m so fucking tired of wondering where I stand. Chemo really fucked me up. Why did we have to get that positive result? I could have just kept going along not knowing. This feels like a cruel prank. At least I can drink when I go visit my sister. Should I bother to ovulation test again? Will my period come again? When? Did I really know I wasn’t pregnant, or was that just fear talking? Being a woman is bloody impossible. Fuck you, cancer. Julian was so happy. I am so disappointed. I feel like a disappointment. I am both devastated and unsurprised. I knew it was too good to be true. I am surprised by how excited and thrilled I was. I am surprised I let myself get so invested so fast. I really don’t know if I can do this again.

Finally: I am strong, and I just need to pick myself up, dust myself off, and keep moving forward.

I’m okay!

Okay first a short bit of clarification.

It’s not like I am desperate to have a baby – that’s not what all the tears were about yesterday. I have two awesome babies – I am luckier than many! But we definitely were seriously considering another baby, and it just sucks to have that choice taken away. When my period came back that one time in June, I honestly thought, “Wait, maybe I don’t want another baby!” I just want to have the choice.

Much of the sadness/anger revolves around not the reproductive side of menopause, but the physical side. I have hot flashes constantly, and they’re miserable. They’re made worse by alcohol, so even a glass of wine can set them off. I have sore hips and a stiff back. My skin breaks out. I’m bloated and irritable. my hands are swollen and stiff every morning. I am forgetful. These are all menopause symptoms. I had hoped my hormone test would come back on the pre-menopausal side, so I could look forward to these annoyances tapering off. Instead, I’m still in the middle of menopause, which means I could be dealing with this stuff for a long time yet to come – years, even.

Anyhow, I talked to Dr. K last night and really there was nothing new – my numbers look bad for my period right now, but he says they can’t predict what will happen over the next four months (end of March is one year from the end of chemo). He says he has 75 year-old women with lower estradiol than mine, so it’s just a question mark right now. In three months he’ll test my blood again and see what the numbers are. Until then, I continue to wait.

But I’m okay. I’m great, actually. I have an amazing family and an awesome life and wonderful, supportive friends. And I’m alive and cancer free, so for now I’m just going to suck it up and deal with the little physical set backs and hope for better days ahead with regard to that!

Hormones and Grief (Video)

A 5-minute video about what’s going on with me. Apologize for the mood and for not just typing it instead – just don’t have it in me to type this up right now. If this doesn’t work, I also uploaded it as unlisted on YouTube: https://youtu.be/Ap5svJsM6V0

I also want to add that it’s not just the baby thing that is upsetting me. It’s all the physical ailments, which are being ascribed to “hormones,” and have no end in sight. It’s going through menopause before my time, before I’m even forty. It’s feeling cheated and old and helpless. It’s everything.

That Thing That All Women Do That You Don’t Know About

I have seen a number of my friends post this article, and I don’t know if it’s because of my age or my height or my general temperament, but I don’t do the behavior the article references. I mean, some of these things I have done in the past – walking with my keys between my fingers, for instance, and in college, lying and saying I had a boyfriend when I did not – but even the latter I eventually stopped. When men would ask me to dance and I didn’t want to, I’d just say no. In one case, a man continued to ask why until I finally said, “Because I’m not attracted do you. I do not find you attractive.” At that point, he walked away.

Once, before I was married (the first time), I was walking down a park path in Monterey, CA. I was listening to my Walkman (yes! That long ago!) and a – I won’t even call him a man – a loser, a waste of space, came up behind me on a bicycle and grabbed my ass. It wasn’t just a cheek, though – it was basically a goose. He slipped his hand nearly between my legs and pulled what I guess you could now call a Donald Trump. He then biked very quickly off.

I was IRATE. To the point that I basically jogged after him, asking everyone I passed if they had seen him, and which way he went. I knew exactly what I would say, and do – and it was possible he’d be going to the hospital after I found him. Luckily for him (and maybe for my criminal record) I didn’t. It still makes me angry to think about. And it wasn’t the only time I have stood up for myself or another woman – in college I once got a guy thrown out of a club for running his hand up my thigh as he walked past me. I once helped pull two drunken jerks off a girl who whispered, “Help me,” to me at a bar. What the article says is true – this nonsense happens every single day. And maybe I don’t minimize, but I also shouldn’t have to be prepared for a fight any time I go out with a dress on.

This article saddens me because so many of my friends have posted and reposted it. I wish I could go after every guy that has made you feel this way. I’m so sorry. I am sad and angry and promise there will be no minimizing if you’re out with me. I will not be quiet. We will roar together.

Politics as usual

Look, I’m not here to judge you. Unless you load your toilet paper with the flap coming out from underneath, in which case I am. And I am judging you harshly.

I grew up in a house with a Dad who had VERY STRONG political opinions. He also had VERY STRONG feelings about anyone who did not agree with his political opinions, and those feelings were VERY NEGATIVE. I saw how mad other people’s opinions made him, and how it altered his life to the point that he wouldn’t watch certain movies or buy certain products because they were directed by or endorsed by some “left-wing liberal commie,” and I made myself a promise. “That will not be you,” I promised myself. “You will not judge people based on their feelings on a political issue.”

I have remained true to this promise. I have friends all over the political spectrum. As far as I am concerned, I judge them based on their actions – the way they treat me, other people, and animals – and not based on who, in their personal opinion, based on their personal experience, is most qualified to represent them or run this country.This has largely served me very well, although I have at times been at the receiving end of other people’s judgments. And that’s really why I’m writing this.

Saw (and reposted) this meme on Facebook today:

wesley

Since the start of this election, I have seen and heard all manner of talk. People talking of deleting their friends who support a candidate they don’t like. People saying nasty, mean-spirited things about each other and about the candidates – and not just regarding their actions, but their looks, their weight, their children. I mean I literally saw a thread on Facebook where one woman referred to another woman’s YOUNG CHILDREN as ugly because the mother was a Trump supporter! How did it come to this? Thankfully I didn’t know either of those women, but I have seen people I know, love, and respect post things that are at best disrespectful and at worst truly poisonous.

This is a tough world. We have chosen each other as friends based on so many experiences, emotions, and of course on intuition. When we’ve weathered this election – and of course whatever the following four years might bring – those words will remain. Whether they’re said about someone specific, about a general group, or even about one of the candidates, any negativity you put out there will remain, and add to this toxicity of these already troubled times.

So speak, and speak with passion and conviction. But also temper that with patience and tolerance – traits so sadly lacking today. And remember…

politics

#Cancerland

This is so, so important. Like this woman, I knew nothing about metastic breast cancer when I was diagnosed, and only found information on it on my own after I began treatment. 

http://www.refinery29.com/2016/10/124446/cancerland-champagne-joy-interview

I do have to add that her words and perspective are very dark and not all exactly true. I have an estrogen driven cancer but mastectomy and hysterectomy were never a suggestion made to me. Likewise, many people live many, many years with metastases. Still, it’s very important to understand metastatic breast cancer and that no one is really a “survivor” after a breast cancer diagnosis – we will all spend the rest of our lives wondering.