Warning: Do not type "what do fallopian tubes look like" into a Google images search. Just keep this grade-school sex-ed class image in mind and forego reality. Heed my warning. I'm looking at you, Sonja.
Great news! The gynecologic oncologist in charge of the ovarian cancer study came back from vacation. She looked at all my data, and concluded that we need not fret about this particular spot on my ovary. Yay! I'm not sure what I will do with the walnut-shaped Deathrogen-pumps, but at least it isn't a rush. I'm going to schedule an appointment with her, to talk about whether to take out all or part of the complicated contraptions down yonder. More later. When that happens. One day.
Warning: Do not type "what do fallopian tubes look like" into a Google images search. Just keep this grade-school sex-ed class image in mind and forego reality. Heed my warning. I'm looking at you, Sonja.
Last year at this time, I was having pretty much the worst week of my life. It was like a waking nightmare. I remember this one moment -- I was watching Craig and the boys. They were gathered together around some picnic table area. I was walking toward them. I saw that picture as my future family -- the one that would remain when I died soon thereafter of the cancer. I was thinking, "He's a great dad. I know at least they'll be OK, because he's a great dad." The same day, I was telling the nurse who was on the phone with me, scheduling various appointments, that this was going to be my last vacation with my children, and I just didn't believe her when she said it wouldn't be.
This year, I came to California again. On vacation with the family. Not quite as far south -- San Francisco this time instead of San Diego. I have some few memories of San Francisco from grad school. Not many -- I was broke, and campus is far away without a car, and even farther without money. We didn't stay in the city this time, either. We stayed at a place very near Muir Beach. This near:
It was beautiful. It was serene. I felt calm. I am glad I gave California another chance.
We decided to experience the anniversary of my cancer diagnosis, known in the biz as a "cancerversary", by having a normal day. Normal is what cancer takes away from you, and what you just want back again and can't quite get your hands on. So we just hated on Valentine's Day the same way we did in years past, spent the day doing random stuff, the same way we did in years past, and just... were. Were alive, were together. It was great! Also I got a great new henna tattoo, from the same person who did my cool henna crown:
I love it. Or er... loved it, as it is now fading away. But when I first showed up in San Fran, I went to a fresh juice bar near a Safeway (because yeah - San Fran!) and this young woman asked me about the henna. I told her it was part of my ritual to commemorate my cancerversary and turn it into something not-awful. Turns out she (age 42) had also just been diagnosed with breast cancer and was just starting treatment. Rare in young women, my ass.
Oh - and I also got a super cool henna tattoo on my scar! Take that, scar.
And a really neat thing happened. As I've mentioned in posts past, I participate in this online forum where young women can chat about issues particular to being diagnosed so young... and on that forum I've made a few eFriends. One of them read this blog and sent me a message, which included this sentence: "I'd so love to meet you some day - don't know if you are ever in the Bay Area, but if so, let me know." Uhm, yeah. How much serendipity can there be? So we met. And it was like meeting an old friend, although it was the first time I've ever seen the woman. It was great! (Hi BlueMonday!)
So yeah, this year is already much better than last year! In comparison, everything is really rosy.
I wish I could just live comparatively. Alas, the best I can do is live in the moment. There is something on my ovary. It's probably no big deal, and they wouldn't even know about it if I were not enrolled in a clinical study to try to detect ovarian cancer early because I'm in a high-risk population. It looks like a spot or a scar, or something, and I recall having someone remark on it in an earlier ultrasound. But back then, I was a normal woman with a random scar-looking thing on her ovary. Now, I'm a high-risk woman with a scar-looking thing on her ovary that might be a bit bigger than last time it was measured, or might not be because it's just ultrasound and very subjective as to measurement, so I'm not sure yet what they're going to recommend. But they were all in a tizzy because here I am, first preventative screening, spot on the ovary.
I was thinking, when I heard about this, just yank out those pesky ovaries. I mean, we're already suppressing them, right? What do I need them for, just to sit around and pose a death risk? Right?
Wrong. So here's the thing. After five years, I won't necessarily need the ovarian suppression any more. They might then switch me off that, and onto Tamoxifen. Because five years of ovarian suppression gives me the benefits as to preventing recurrence, and then Tamoxifen would be enough for another five years. [Not that I believe this. In five years, they'll be saying something different, but this is the current word on the street. And all assuming, of course, no actual recurrence. But some of my friends have forbidden me from recurring, so I'll keep that in mind.] And on Tamoxifen, your ovaries aren't suppressed. My ovaries might wake up. My doctor says, since I'll then be only 43, that there is a high chance they'd wake up, and that would give me 8 more years (assuming average onset of menopause) to play with and try to make friends with estrogen again. Because of all the good things estrogen does, especially for my heart and my bones. So they don't want me to just yank 'em.
S.I.G.H. Why can't any decisions be simple? And -- great -- I get to go through menopause twice! Yay! This is me being lucky!
OK so, along the way I learned some things about ovarian cancer. It is so deadly because it is so hard to detect. But it has symptoms. Here is an article from the New York Times and a summary of the symptoms from that article:
The symptoms to watch out for are bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly and feeling a frequent or urgent need to urinate. A woman who has any of those problems nearly every day for more than two or three weeks is advised to see a gynecologist, especially if the symptoms are new and quite different from her usual state of health.
The Marsha Rivkin Center for Ovarian Cancer Research, which is running the clinical trial I am participating in, did the earlier study that found those symptoms. So pay attention, ladies. It's probably nothing, but it's worth your copay to check.
I also learned that 50% of ovarian cancers start in Fallopian tubes, and you only need one ovary to climb out of menopause (although coming out of ovarian suppression, having two would be a better chance of resuming ovarian function). So... I'm considering getting at least my Fallopian tubes out, and the troublesome ovary. Or the troublesome part of that ovary. I'll be pondering this while I wait for the gynecologic oncologist to get back from vacation and talk with me.
Next week I meet with my surgeon again regarding Lump Vader, and I expect her to say everything is fine and just watch it and make sure it doesn't change or grow. This is not comforting particularly, but I don't know what else they'd do. I don't want another biopsy if there is nothing to biopsy. Extra scars for nothing? No thanks. But if they want to do it, OK. So we'll see.
I stopped taking clonazepam (again) a few days ago. You'll recall that last time I did this, I ended up crying at Costco. This time, the only person crying at Costco was Kid2, so I think we chalk it up as a win so far. One more med down! I had four weekly pill-minder things (wake-up, breakfast, dinner, bedtime). I was able to reduce to three (combine wake-up and breakfast), and I think that if I can stay stable without clonazepam, I can drop down to just breakfast and dinner.
And oh yeah - I am FAMOUS! Super awesomesauce. They love me at my gym almost as much as I love them. Some of you have seen this already on Facebook, but just in case... I'm really proud of myself for this one, people.
Check out this cool picture of me getting the award. That's Nick, trainer-par-excellence. And my helmet head, preserved for eternity.
To see how subscribing to this blog works. Good for you if you read this! Yay!
I have a cancer doppelganger. Her name is Beth, and other than that we're the same surface person. We both went to UW law school, both practiced law in the greater Seattle area, both have two kids about the same age. Both have breast cancer. Both were diagnosed about a year ago. And get this - both born on EXACTLY the same day. Of the same year.
That's where some of the similarities end. Her cancer is stage IV. That means it has spread beyond the breast and local lymph nodes. It's in her bones. I am still practicing law; she has gone into disability retirement, because stage IV cancer is a full-time job. She was a civil rights lawyer.
Beth writes about cancer and many other things on her blog, and she is amazing. Her writing is great, and she is going to be in a new book! I am so proud of her and excited for her.
Recently she had a PET scan that showed her cancer is spreading more. It's not unexpected that a stage IV cancer would spread. That's what they do. They spread. Eventually they kill you. But I'm rather displeased to know that it's starting already. We all understand statistics, but this is MY FRIEND, goddammit, and I can't DO ANYTHING.
So. What to do? What to do? WHAT TO DO??
I have no idea. But then I was texting with her and she wrote, "You are a really good friend." I shit you not - she wrote that, while I was already mentally drafting this blog post -- before she had her PET scan results -- about how to be a good friend when your friend is in a cancer shitpool. I was a bit taken aback, because I was in a brain swirl of "FUCK IT I CAN'T DO ANYTHING WHAT THE FUCK DO I DO" when she wrote it. I asked her what I'd done, but she didn't respond to that question, probably because at the time she was at her oncologist's office doing her best to NOT DIE.
Here is proof:
Anywhoooo. I think what I did was... I have no idea. I was just listening and being real and not trying to tell her to get her chin up and fight, and not trying to get her to tell me it would be OK. I don't know what part helped her, but some part did. Different things work for different people at different times. A few things worked really well for me while I swam in the HoneyBucket, so I'm going to talk about some of those, and maybe they will work for you when you're scratching your head and trying to figure out how to help someone. I write mostly from the perspective of what helped me during cancer treatment, although you could probably substitute "any shitty traumatic life event" and these things just help.
Life is ridiculous. We might as well laugh about it as much as possible. Crying helps a lot, and grieving is an important part of the coping process. Not to be rushed. I'm rather strongly grieving my losses right now, as we approach February 14, One Year Later. Cancer is awesome... the formal definition: "extremely impressive or daunting; inspiring great admiration, apprehension, or fear." But along the way there are also some good lessons to be had, including the great power of humor to lift spirits.
On a forum for young women with breast cancer, the level of wit, snark, and sarcasm that blends with the commiseration, support, and utter despair is a testament to the almost universal reach for and allure of humor in dark times.
Craig somehow knows these things innately, and he did something really amazing for me -- for both of us -- from the start of the process. Cancer treatment involves a great, great many needles. I am no fan of needles. This repeated trauma was a difficult part of treatment for me. The first time I went for a blood draw, before surgery, before anything, they asked at the lab, "port or vein?" and I started crying. I realized that to them, this was routine, and to me, it was going to become routine, and holy hell, I did not want that to be my routine.
To lighten things up, Craig curated his own list of jokes from the interwebs. And every time I was stabbed with a thin metal cylinder, he would be reading out a few ridiculous jokes. He had the whole lab laughing many times, including other patients, on the other sides of curtains. It was... awesome. The other definition: "extremely good; excellent." Humor is awesome. Even at the darkest times. Especially at the darkest times.
I've always hated laundry. Especially small children's clothing. Seriously? How can there be 762 items of clothing in ONE BASKET? And even when you're getting chemo and radiation, the children keep on with the laundry. It is NUTS. So is my friend Kristine, because as she was folding the 762nd item of clothing in one particular basket of laundry for me, she said that she "like to fold kids' clothes" because "everything is so cute and small and all the things are different." I don't know what that girl is smoking, but I kid you not - she wasn't saying it to make me feel better, she just enjoys folding laundry. Seriously. And she folded a lot of laundry for me, on my bed, while I lay there and talked. And she spent a lot of time at my house, playing with my kids, while I sat there and watched. I couldn't do it, Craig couldn't do it, and she did it, and she smiled, and I am getting choked up even typing this so let's just summarize and move on: do things for people that they can't do for themselves, seemingly little things that keep coming up. Work it out with them what helps, and do it like you want to do it, and smile, and later they will get choked up about it. Here are some suggestions: LAUNDRY, dishes, rides, vacuuming, bill paying, decluttering, grocery trip planning or doing, vehicle maintenance, getting gas filled, playing with kids, walking pets, helping with kids' homework, taking kids out for a donut, watching kids, running errands, helping respond to email. Whatever helps. Not what you would want if it were you - what they need.
My neighbor Anand made me the best chai in the universe every morning and left it on the porch [ed. note: child and/or spouse labor often involved in delivery, and sometimes in manufacture, of chai] so it was there when I woke up and dragged myself out of bed. Sometimes that took four hours, and a few times, the chai was the only thing that got me out of bed. Everyone has a "chai" that will get them out of bed. What's your friend's chai?
I think you all know this. People still need to eat. And their kids especially don't understand the problem. Make food. But make food they like, because nothing is worse than having food made that you don't like and your kids won't eat. So ask what they like, and make that. Or don't. Buy them gift cards to places like Dinner's Ready or similar places, or places they like that will deliver, or whatever works for them. You don't have to be a chef. Some of my favorite meals - a bunch of various stuff from a yummy grocery store deli, plus a couple of random sandwiches, plus a couple of desserts for the kids -- no cooking, just bought and brought to the house, so everyone in my house could pick at what they wanted and no one complained. Magic.
Listen to them. Write "no response needed" at the end of the email. You weren't going to get a response, anyway, but writing that makes it easier for them to not feel guilty about it. Read their blog posts before asking what is going on with their cancer, because maybe repeating the same miserable experience over and over again might not be what they want to do. Or don't read it, but then don't ask about it. Don't tell them that they "have to fight" or "keep a positive attitude" and they "will be OK." Believe me, I say this from personal experience: it is hard to absorb so much hope and anxiety from people who so very much want you to be OK, and hard to handle their fervent and sometimes overt wish that you'll confirm that you're going to be OK, when you're not sure what you are and you don't even feel human. If you Google what not to say to someone with cancer, you'll find a good hit list. Like this one. And you could do it the other way too: what to say to someone with cancer. Just read a bunch of them, and you'll get the idea. But more importantly than all of it, be supportive even if they are doing things you wouldn't do. It's not you. Listen. Support, listen more. Then listen more.
From the friend side, it's never enough. You never feel like you're doing enough. I'm on both ends of this one. I want to do more for my doppelganger, and I just can't, because what I want to do so badly is to cure her cancer. And I just can't. (Sidebar - donate to places that research cures for metastatic cancer instead of awareness, and that's a good start.) I'll never feel like I'm doing enough.
And from the other side - being the receiver? It's all enough. Whatever you can do, is enough. You wrote a note? That's enough. You called? I'm not really a phone person, but ok - that's enough. You made a meal? That's enough. You went out for coffee and listened? That's enough. You read a blog post and made a supportive comment? That's enough. You care?That's enough. You don't have to do it all. You don't have to do it every day, or every week, or every month. You don't have to feel guilty because you didn't write. Be you, be real, be present, be honest, reach out, do what you can. I know how you feel. It's enough, because it is all there is to do.
I went to my psychiatrist yesterday. I discussed my cognitive issues with her - as far as I can tell, I don't have any loss of memory or knowledge/intelligence, but I have a righteous lack of executive function. I can't get things done, not because I don't know how to do things, or what to do, but because... I'm not even sure.
It's like this: I go to the grocery store to get stuff for dinner. I walk in with a list, maybe? And then I get the stuff. But I might get a cucumber, and then walk across the store to get beans, and then remember I need a lime, and then get something from the freezer, and then oh dear - lettuce. Then back to get yogurt, and crap, forgot the onions. And it's all on the list.
Or like this: I can't plan routes to places I know. I can't decide whether I should use Route A or Route B, and I feel lost (literally). Even though I know where I am, and where I need to go, and three ways to get there from here. Not sure what I'd be doing without my Google Maps right now.
Or like this: I sit down to work, and after 45 minutes, have accomplished nothing, and I wasn't wasting time surfing the interwebs. I mean, I know how to procrastinate. I am good at it, having honed my skills for years. I am not doing that.
I don't recognize myself. I feel like a stranger. I don't feel like me, sometimes at all. It's like I'm in a parallel universe, watching myself, and being all, "get it together, Natasha." But I don't even know what's broken. I don't know myself. It doesn't matter how much I meditate on it!
So anyhow, my psychiatrist? She says that it is believed to be the practically overnight onset of menopause from ovarian suppression (just like oophorectomy, but possibly reversible if you stop taking the shot in the behind) that leads to most of the cognitive dysfunction she has seen in her breast cancer patient population. Not actually the chemo. People who age into menopause have this thing -- also unpleasant, but apparently beneficial, wtf, seriously -- called perimenopause. It takes a few years to go from functioning ovaries to nonfunctioning ovaries. And then, they still have some estrogen from other sources, but really it's the ovaries. The other estrogen can revive my latent (and hopefully nonexistent) cancer, which is why I take AIs and am not in the Club. But the defunct ovaries = menopause.
She says that brains just don't like rapid changes. And the instantaneous removal of estrogen has a profound effect on the brain. And that's one reason menopause usually takes a few years to happen, because your brain matters.
So now what.
I'm currently on a high dose of Lexapro, an anti-anxiety medication. I am not feeling too anxious about it. Ha. Ha. It is a serotonin medication. Serotonin is one of a few neurotransmitters psychiatrists medicate and regulate. Dopamine is another, norepinephrine is another.
The first thing we're going to do is taper me off the klonopin and maybe that will make my brain function normal again. And if it doesn't seem to, we'll start switching me slowly slowly over from Lexapro to Pristiq. And that regulates both serotonin and norepinephrine. It should help my brain.
But the moral of this post is -- PRISTIQ? Really? You named a medicine PRISTIQ? How much did you pay for that branding company to come up with that name? Seriously. Almost as bad as Abilify. I'm embarrassed. Not because of stigma of mental health issues. We need to talk about these things. But just pure, unadulterated embarrassment of having to take something with such a ridiculous name. Dammit, pharmaceutical companies.
Recently I was having lunch with a good friend, and we were talking about menopause, sex, mental health, and other things. The kinds of things that happen, and that you talk about with good friends, but you don't just talk about. I mean, really. Who's going to talk about that online, to a bunch of anonymous strangers?
I actually have mostly been hampered because of nonanonymous people. My dad reads this blog, you know? Hi Daddy! I love you!
And I mean, it's awkward. I don't actually want you, whoever you are, to know specifically about my sex life and all that jazz. But now that this blog is really out there, and hopefully being read, at some point, by another young woman like me stricken with cancer and all its never-ceasing life-changing consequences, I want it to actually be useful. Not just interesting. Actually. Useful. So, I'm going to talk about these supposed unmentionables, but generally, not specifically. Some of these things may be happening to me, and some may not, and you'll never know unless I tell you about it over lunch. So let's do lunch. Unless you're my dad, in which case I love you mkay bye.
If you're offended by words like vagina and intercourse and orgasm and antidepressant and depression and profanity generally, this is your cue to exercise your free will and self-control. My blog probably isn't for you.
Installment One: Chemical Menopause
Menopause isn't fun. It isn't particularly unfun either. It's a thing. I don't hate it. I just wish it came later, when it was supposed to come. I've magically been chemically aged by about 15 years, and probably more than that. Some people have early menopause just because it happens (although generally it still doesn't happen overnight), but the average age of menopause is 51. That's what sucks. I mean, I was hoping to go into menopause some day, as really all of you out there with vaginas should hope, because the only standard way for a female human to not go through menopause is to die before menopause. And believe me, you don't want that. (If you do, please call a suicide lifeline. I'm not kidding around. Possibly someone reading this is really miserable right now, which makes sense, and needs that type of lifeline.)
My main objection to menopause, other than the standard it's-not-fair-I'm-too-young-for-this-early-onset-menopause-will-shorten-my-life truth, is that I'm not and will never be part of The Club. When I talk to people who aged into menopause the normal way (because you know... they AGED into it), they tend to have a kind of "welcome to The Club" attitude. Like, "yeah, you were going to get here at some point, sorry it's early, but welcome to The Club."
I'm not in The Club. The Club worries about things like osteoporosis. Joint aches. Hot flashes. Mood swings. Weight redistribution and weight gain. Insomnia. Vaginal dryness and atrophy. I worry about those things too, since holy hot flashes, Batman. But more than that - I worry about estrogen. Estrogen can FUCKING KILL ME. Regular menopausers still have some estrogen. The female body makes estrogen in the ovaries mainly, until menopause, but then in other places - for example, "the liver, adrenal glands, ... the breasts, [and] [f]at cells". Although much less estrogen is made than the ovaries did premenopause, "[t]hese secondary sources of estrogens are especially important in postmenopausal women." Unless you have hormone-sensitive breast cancer, you and I will never be in the same menopause Club.
Did you notice that a bunch of these article have URLs that include the word "disease"? Menopause as disease. Thanks, world. Let's judge every fucking thing with poor semantics. There's not enough stigma in our lives already. Seriously? It's just offensive.
Did you know that estrogens have an effect on about 300 different tissues throughout a woman's body? Me neither. I wish I didn't know that. Because estrogen can KILL me now. So I can't have the estrogen that card-carrying members of the regular menopause Club can have. I have to prevent estrogen's creation by my body (actually, prevent something about how a protein turns it from an unusable form into a usable form blah blah blah whatever) by taking an aromatase inhibitor (AI, and not artificial intelligence). So now hopefully estrogen won't feed my cancer (time will tell), but it also won't help out those 300 other tissues. That sucks for those tissues. And for me.
Brain function. Estrogen affects brain function. Chemo brain is a thing, but AI brain is a thing too. It might be the same thing. There aren't a lot of studies. But the AIs are also a culprit. I am going to write about chemo brain more later.
Mood. Estrogen affects brain function. A lot. Mood is a brain function. More on this later too. But it's also related to estrogen.
Vagina. Estrogen withdrawal makes vaginas dry. I don't know about you, but a dry vagina isn't very useful to me. You can use estring. If your oncologist says it is OK. That puts estrogen in your vagina, so hopefully it won't wither away and die. Some oncologists don't think it's OK to use an estring. It spikes your blood levels of estrogen. See supra ("Estrogen can FUCKING KILL ME."). But some oncologists think that spike is a very short term thing and then the AI will prevent the killing part. But if you don't have at least local estrogen here are some of the fun symptoms of vaginal atrophy:
Sex Drive. Menopause affects your sex drive. Some people have more, reportedly; some people have the same; and some people have less. [If you have more, please comment below to substantiate this claim as even remotely true.] It is disheartening to read articles that say things like "sex drive isn't worse after menopause" because "you're over 50 and there aren't kids in the house to worry about." I know most menopausal women getting it on and most women over 50 getting it on are the same people. I understand what that Venn diagram looks like, because I is smart and I done studied set theory.
But there are slivers on the sides of my nonscientific diagram. See them? Some women over 50 with extant sex drives are not menopausal, and some women who are menopausal with extant sex drives are not over 50. No one wants to write articles about them, because who'd read those? So, say, if some menopausal woman under 50 were to try to find articles about sex drive after menopause (probably because she'd be trying to figure out under what rock to find one, and whether any of the suggestions on disreputable websites are not ix-nayed by her oncologist), she might end up reading article after article that presumes she's Much Older Than She Really Is, which just rubs it in that she's been chemically aged before her time. So if this describes you: know that there is a place to talk about this with other young women, but no one seems to be talking about it. Probably because we're all busy trying not to die.
Weight. Your weight changes, usually going up, both in absolute numbers and in location on your body. These shifts -- more weight, and higher up near your waist -- are crap and suck.
Heart. Fuck. This too. Estrogen plays some role, but everything about menopause is bad for your heart. LDL cholesterol goes up, blood pressure goes up, triglycerides go up. And that weight shift? It tends to become visceral body fat, which is like the fat dudes carry around their waist and in between their organs. It makes your heart unhappy. Fun times. At least the years of life I'm losing come off the end, even though they feel like they got stripped out of the middle.
Fertility. This is a tough one. Menopause is by definition the end of fertility. This can be a hard pill for woman to swallow at any time, even a woman of average menopausal age -- I've seen some have a hard time swallowing that pill. It doesn't matter if you want any kids/more kids. It's in your head, which is pretty much as real as things can get. Probably because evolutionarily we're useless then? -- but see the Grandmother hypothesis. The uselessness is of course, as you know, bullshit. But you can't procreate any more. I'll discuss how this loss of fertility, even if you didn't need it any more, affects people in another post some time too. For now I just want to say, for anyone reading this who is losing fertility before having started a family and who wanted to start one -- including even before finding a partner with whom you'd want to start one, one day -- I am sorry sorry sorry sorry FUCK. It is such a mind fuck, it really is, and please please make sure you talk to your oncologist about fertility preservation options before you start chemotherapy. Before is the time to talk about it. Because even if you choose to do nothing about it, before is the time to talk about it. Knowledge is power, my ladies.
So Many Other Things. If this isn't enough, you can use The Google to find more. Lists like "The 35 symptoms of menopause" aren't hard to find. How do you think I wrote this post/I don't know that much about menopause.
So. It's not the same for those of us chemically-induced into menopause by breast cancer and those who have breast cancer after menopause, because the farther away from 51 we are when we dive into that hot-cold-hot-cold-hot-cold-hot pool, the more years of non-menopause we lose. When I was first diagnosed, someone who I greatly admire said, "There's no good time to have cancer." True. But some bad times are worse than others.
So that's it. It is what it is. I don't have any advice. I'm a big fan of following my doctor's advice, and I'm not your doctor, so I'm not going to advise you specifically on anything. But talk to your doctor. Do all that you can to get to the life you want to live. Don't give up. It's your life -- don't just survive it. Live it. Quality of life matters. Peace out.