I met with the gynecologic oncologist last week. It was really interesting. I don't like when things are interesting, about my body. I want the most boring body ever. Oh well.

So what we talked about were two things. (1) The spot on my ovary and (2) the option of prophylactic bilateral saplingectomy as a form of ovarian cancer risk reduction. 

(1) The spot on my ovary. 

She is not concerned. They have had radiologists review my various imaging studies and she does not think there is any reason to be concerned about the spot. The radiologist noted that it looked like a scar (eggs leaving ovaries can leave scars) and upon review, it seemed not changed in any way that concerned them. She said that if I wanted, they could do another imaging study on the ovary. I asked her if she'd get another one done, if it were her. She said no. I'm not going to do one. There isn't any harm in doing one - no radiation or anything, it's just ultrasound. But I don't enjoy doctor's appointments, and I'm not really as worried about the spot as about the potential scary stuff. They say the spot is OK, and they're very concerned about ovarian cancer (so would tell me if there was anything to be concerned about)... well, then, the spot is OK.

OK, so number (2). That's what I'm worried about.

(2) Prophylactic bilateral saplingectomy.

Saplingectomy is the removal of a Fallopian tube. Bilateral means both. Prophylactic means as a preventative measure. It's not a clinically-tested thing, really, yet. There are some clinical tests going on to determine whether it will be a beneficial thing. But they are still in the data-collection phase. There is some data that some/most ovarian cancers actually arise in cells found in the Fallopian tubes. I'm not sure how strong the data is or what it really means -- neither are the scientists. They need to study it. It certainly isn't the standard of care right now, to remove Fallopian tubes prophylactically to avoid ovarian cancer. The doc said that these days, if she were doing a hysterectomy (with or without removing ovaries), she would remove the Fallopian tubes too. But, absent indication for going in, in the first place, she wouldn't do in just for that. 

But what about my increased risk of ovarian cancer? My grandmother died of ovarian cancer at age 63, and I was diagnosed with breast cancer at age 37. That's enough to get me into the clinical study to get extra monitoring. But - apparently age 60+ death of ovarian cancer is old enough that it could be a one-off, and age 37 breast cancer absent BRCA1/2 mutation (and I am absent BRCA1/2 mutation) is not enough to prompt an oophorectomy. Put together, the doc says that at some point, I'll want to have a hysterectomy with bilateral saplingo-oophorectomy. But that point will come after I stop ovarian suppression. If I stay in menopause, that would the point -- five years from now. If I come out of menopause (once they stop chemically keeping my ovaries asleep), then the point will be when I age back into menopause. And if anything else happens where some sort of -ectomy is indicated, then they'll take out the tubes at the same time.

The side effects of oophorecotmy (irreversible menopause++) are more significant than the side effects of ovarian suppression. Also, it is permanent. So not really on the table. I hear a lot of women regret doing it prophylactically, although I've seen comments online going the other way too -- didn't do it for years, dealt with suppression, did it eventually and wished they had done it from the get-go. I don't know. I'm not really qualified to make these decisions, but I have chosen qualified medical providers so I'm just going to go with them on that one. I have to put up with the shots to suppress the ovaries, but I'll take that down-side over something permanent I might regret.

The saplingectomy is harder, because I am willing to put up with a potentially unnecessary surgical procedure which seems to me to pose little risk beyond surgery (some risk of interrupted blood supply to ovary), but potentially a big upside (lower risk of ovarian cancer). But then the doc said it doesn't work like that. It's not linear. Getting rid of the tubes doesn't mean I've actually reduced my risk 50%. So long as I have the ovaries in place, my risk is my risk. There is no proof that removing the tubes works to reduce risk. Unlike some of the other decisions I've made -- e.g., lumpectomy + radiation v. mastectomy -- there also isn't "negative" proof. That is, no proof that the more drastic intervention (there, mastectomy) doesn't improve outcomes. [Edit: Confusing sentence! No proof here regarding better outcomes, but there is evidence that mastectomy is not better than lumpectomy + radiation to prevent local recurrence.] I mean, I just want to confidently decide. Proof that something doesn't work is just as good as proof that something does work, when it comes to making decisions. But in the absence of data, here, the decision is not to act.

All of this medical math is so weird. I mean, really - it's so complicated, and some of it contradicts other of it, and none of it follows the laws of Newtonian physics as far as I can tell -- and then you're supposed to make decisions. I wish it weren't my life I was deciding about. Little decisions at each doctor's visit, adding up to life or death. When it's all on your shoulders, you want to do everything you can to make sure you won't later think back, "I wish I had done something more." 

Housekeeping: You can subscribe to this blog! If you're on the web on a desktop, the link is to your left [edit... erm.... right. Always been directionally challenged. This is not party of chemo brain!] on the screen. On a mobile you have to scroll waaaaaaaaaaaaaaay down to see it. See the button that says "subscribe!"? That one. FeedBurner is a Google service. If you submit your email address, and verify, it will send you an email on days that I post something, so you don't have to check back. And the email has the full text of the post with pictures, so you can just read it and delete. Mkay? Although I think sometimes it drops a photo, but whatever. If that makes it easier for you, it is a tool you can use.

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This post is long. Hopefully not TL;DR... 

I was talking to a good friend recently and she said that she has read these lists of things not to say to cancer patients, and they make sense, and that when I tell her that something isn't great to say after she has said it, that also makes sense... but that when things are coming out of her mouth, they sound good. It's a tough line you guys are toeing, because you want to help and you love us cancery types, but then we yell at you about what to say and not say, and like, how are you supposed to know all this stuff? I mean, I didn't until I was in it. I recently read a post online about people who have had miscarriages blanching when people say they "lost" a baby, as though they were so absent-minded they didn't know where they'd put a human child. Words are so powerful, and yet we throw them around without deep thought. And that can cause pain that we never mean to inflict. So please read this post with that thought in mind. We know you're trying, and we love you. And therefore, being low on self-censorship, I will tell you something to not say, and why, and then I'll extrapolate it to non-cancer situations, because cancer is a shitty situation. And life has a lot of shitty situations. And we don't have to relate to things with personal experience to think about our words and how they affect others. 

OK. So.

Some of you already know that I lost my eyebrows again a couple of weeks ago. 

It's been an interesting process with the eyebrows. The hair on my head behaved quite differently. My scalp hurt, in some weird way I can't describe well. Like, sensitive, and numb? That doesn't make sense but there it is. It started being easy to pull out one day, then I cut it short, then a couple of days later I was in the shower and BAM. Waterfall of tiny pieces of hair. They stuck all over me and wouldn't come off! I was standing under the spray and freaking out, until Craig wisely suggested I breathe and try using some soap. The soap got them right off. But then I had some sort of reverse-mohawk action going, kind of bald on top and a bit fuzzy on the sides. I heard about using lint rollers to take hair off. Which was fun. But note to anyone reading this who faces this situation: don't overdo it on the lint rollers, or you will end up with a very painful raw and red scalp. Seriously.

So then I bought a cheap Norelco dry-shaver and got rid of the random fuzzy bits. I shaved my head with that pretty often, because my scalp was so sensitive the little bits sticking out and snagging on things made it hurt worse. And my scalp hair kind of sort of tried to grow back during chemo and then kept falling out. Tiny little spurts of doomed growth. The other weird thing you wouldn't think of but that kind of makes sense? -- it always felt really windy. And light breeze felt like a strong current. I think with longer hair and being used to that weight, the follicles didn't move much with a breeze. But hair that suddenly goes from about 24" to about 1/4" long? Much lighter. And any breeze felt like it was pretty much a gale! It was eery/interesting.

OK so anyway - this whole time, I barely lost any eyebrows. I wasn't growing any, which I know because I didn't have to tweeze any. But I basically had fabulous eyebrows throughout most of chemo. It seems my eyebrows grow really really slowly. Every day, human hair that is in a growth cycle grows about .3mm to .4mm. Some protein(?) is added to the bottom of the hair at the follicle, where the cells are rapidly dividing. Chemo affects all rapidly dividing cells, good and bad. The way chemo makes hair fall out, apparently, is that the day of the poisoning, the protein added on the bottom is screwed up by the poison.  So, when that part of the hair grows out through the skin and reaches to surface of the skin, the hair snaps off there. My head hair took about 10 days to be really easy to pull out, and I cut it to pixie length on the 11th day. I got my kickin' Seahawks hairdo two days after that, and then by day 15, I had my Terrifying Shower of Sticky Hair Pieces.

But the eyebrows? They just hung in. I don't know exactly how it worked, but apparently my eyebrows grow really slowly, so they didn't push out that fast. I was into the beginning of radiation before they starting thinning. And by then, the new hair wouldn't be murdered by the poison anymore, so when it started growing back, it would be growing back.

Here are some pictures. Me before (actually this is a week after chemo1, but still no hair loss):

Me during chemo. Don't I look great?! Love this photo. Definitely thinning a bit, but still quite lovely. 

Me after chemo and radiation, when my eyebrows started growing back. Between the awesome picture above and this picture below, the eyebrows thinned (relatively uniformly) and then started growing in. This red-cap picture was taken in mid-October, so about 2.5 months after my last chemo. This picture is from the day of my first post-chemo eyebrow wax. What a great day that was. 

We did another photo shoot a few weeks ago, and this was me then. Not anywhere near my original furbrows, but you know, decent for post-chemo. Maybe a little thinner than October. maybe just a slightly blurry picture. I don't know, I didn't count the hairs. Not complaining. I didn't ever lose all my eyelashes. I lost almost all the lower lid lashes, and the upper lids got a little bit spaced out, but I didn't go totally lashless.

Now I mean, not the best lighting. But I look scary in that picture. Like, mug-shot scary. The vacant stare. And really - why do I still have them in the middle, so I look extra angry? I digress. My eyebrows kind of kept up with things, and then 7 months after chemo stops they FALL OUT? What the what? 

SO. Apparently this is a thing. 
Look, examples of comments I found on the interwebs:

"That said, many people have had brows and lashes thin out in 3 month cycles following chemo for a while -- it's like chemo resets them all to a grow/shed cycle together and it takes a while for them to stagger the growth cycle the way they did before."

"They grew back within a few weeks, but fell out again about 3 months later.  That happened again and again.  I've heard the same thing as revkat -- it's sort of a synchronization that occurs after they all fall out the first time.  It takes awhile for the growth cycles of the individual hairs to get out-of-phase.  Normally, we hardly notice when one or two lash or brow hairs come out; but when they're all (or mostly) gone, it's quite a shock."

Uuuuuuuuuuuuuuuuuuuuuuuuuuuuuugh.

If you've ever plucked your eyebrows -- that moment when you realize you shouldn't have plucked that one extra hair. It leaves that gap, you know? Ugh. So frustrating, and it takes so long to fill in. If you get waxed -- that moment when you look in the mirror and realize the aesthetician doesn't actually have a great sense of aesthetics. If you use an eye pencil -- that moment when you realize that you look ridiculous and have to remove and redo the brow. 

All those moments? Nothing to do with this moment. I know it is hair. I'm not a moron. I mean, I'm having some trouble with my cognitive function, but it isn't that bad yet that I'm not aware of what comprises eyebrows. It is hair, losing it is a side effect of chemo. It will grow back, maybe not as much, maybe not as thick. Apparently it will randomly fall out in an orchestrated way, but hopefully not again.

What this moment is, the moment when you wake up, months after chemo, with a sudden loss of hair on your eyebrows... This moment is a visible manifestation of physical, emotional, and psychological trauma. It's a trigger. It sends you back in mental time to actually feel, in a PTSD kind of way, the physical feelings you were feeling when you lost your hair to treatment. It sends you back. You feel them again, these feelings, like they are happening right now. Not as though they are a memory. Nothing you ever wanted to feel again. And when it happens with no warning, out of the blue, without being something on your list of Things That Might Happen Today Because I Had Cancer Treatment, it shakes any trust you had so carefully rebuilt between yourself and your body. That trust you instantly lost when you were first diagnosed and realized that your body was figuring out how to silently kill you. It makes you jittery in your own skin. What are you going to do to me next, body? What game are you about to play? For me, that instantaneous loss of perceived understanding of my body was so big, it was and still remains hard to grasp intellectually. It's almost comical, sometimes, the drastic differences between befores and afters in my head. So much more vast than anything in those eyebrow pictures. 

When I was hyperventilating the day this happened, and barely able to see for my emotional turmoil, and made my dear friend Darcy leave her office and get in my car and subject herself to the danger of my freaked-out-driving-to-the-parking-spot and then to watching me freak out more while seated in the parking lot, and then freak out more while drinking coffee -- what she said was one right thing to say. "It never fucking ends, does it?"

It is not just eyebrows. It not actually not JUST anything. What it is, is my emotions, my mental health, a symbol of all that has happened, and all that might yet happen, and it is all very, very traumatic. It grinds your original trauma deeper into your soul. I don't know how else to say it.

The word "just" is so denigrating and dismissive. No matter how much you want to help, minimizing an experience using the word "just" doesn't show it. It can't show it. Even with a good tone of voice. It communicates a lack of empathy and awareness, even when empathy and awareness actually is present. You don't mean it the way it sounds, I know. You mean something like, "I know, it is horrible, terrible. I hear you. I hope that you're not losing sight of all that this experience has brought to you, including that the treatments causing this hair loss saved your life, and I hope that gives you comfort when you deal with this issue." What it sounds like is, "Why does this nonissue bother you so much? Get your priorities straight." Words matter; they matter so, so very much.

The lack of empathy is the part that really gets to me when I hear the word "just." Not with respect to me. With respect to anything that reflects on a person's inner world. When you're hurting, nothing is "just" anything. Your emotions are everything, and when you reach out for help, you're vulnerable and taking a risk. The worst time to minimize someone's emotions is at that very moment when that person is reaching out. The subject matter of their emotion is almost -- not entirely, but almost -- secondary. The emotion itself is what needs holding and tending. That is what makes friendship and love so sacred. 

It's not JUST an argument with a spouse. 
It's not JUST the anniversary of the death of your dog. 
It's not JUST a parent's disapproval. 
It's not JUST putting your kids in childcare. 
It's not JUST deciding that breastfeeding won't work after all. 
It's not JUST deciding not to have a third child. 
It's not JUST a broken finger. 
It's not JUST heartburn. 
It's not JUST a bad haircut. (This one's for you, my dear Beth.)
It's not good that she was JUST eight weeks pregnant.
It's not JUST a decision to get divorced.
It's not JUST a decision to stay married.
It's not JUST a food allergy.

That word "just"? Lose it. Don't say it, ever, when you're hearing someone open up to you. It may not seem big, compared to something else. Or it may. It may not seem big, when you haven't experienced it yourself. Or, maybe it does. I don't know - I'm not in anyone's brain but mine. Something I feel like, why is that person freaking about this thing that has a really simple solution? The answer probably isn't, because he or she is an insensitive, unappreciative whiny moron. It's probably something more going on.

It may seem like someone is focusing on a single tree and not even aware of the lush, beautiful forest. But when we reach out as humans, we're trying to make that brain-brain, heart-heart, soul-soul connection. How wonderful, and what a testament to our value to our friends, when they choose us to reach out to. How painful when in those moments, those needs aren't acknowledged and carefully held with compassion. 

When I read that article about "losing" babies as a euphemism for miscarriage, it hit hard because I've used that phrase, and I don't want to say things that hurt people. Not to be politically correct. But because although I haven't had a miscarriage, I can imagine its pain to someone talking to me is so big, and looms so ever-present. A client of mine, aged 88 when we met, discussed her miscarriage when I asked about her children -- over 60 years ago and still top of mind. She had several children. But still top of mind. I've said that phrase, "lost a baby." It seemed innocuous, and somehow still does, because it is something I don't understand, but I'll not use the phrase again. I wouldn't know not to, until I read this. So I don't feel bad for having done it, and I hope that the person hearing it didn't feel her pain diminished. But I won't do it again.

And in conclusion, here I am a few minutes ago, with fake eyebrows courtesy of makeup and tips from the magical Kristine:

Great news, a little tardy -- I met with my breast surgeon about a week ago, and she concluded that my breasts, which are dense, are just lumpy and bumpy, and that Lump Vader is not something that we need to biopsy. I can officially stop worrying about it, which I will add to my list of stuff that I unofficially continue worrying about.

Also, I asked her about the really raised, painful, itchy scar I have where I had my port installed/removed. It was about 1/5 inch raised from my skin. Not quite a keloid scar, more what they call hypertrophic. She said she could inject it with Kenalog if I wanted. Kenalog is a steroid, and it thins the skin and often makes hypertrophic scars better. No guarantees. But she said within a day or two, it would help make it less painful and itchy. I asked about side effects/risks, and she said that the injection "stings."

Please be advised: you and your surgeon may have different definitions for the word "sting." Also, I didn't realize until I said OK that she meant Right Then. 

HOLY MOTHER OF ALL THAT IS GOOD AND PURE. That hurt!!

The poor nurse probably has broken fingers from my death grip. At least I didn't scream this time. Just a few yelps! 

Anyhow no before picture, since the whole thing happened pretty fast -- much faster than my brain currently works to think about taking before pictures. But here is a "night of" picture and a "five minutes before I published this post" picture. 

It is still really pigmented, but mostly flat-ish. Not a huge raised lump. Just a mini lumpy bumpy. I wish I had the before so you could see the crazy reduction in size! Alas.

She can do it again in 3 months. Yippee!?

She advises against any lumpectomy scar revisions, since I Heal Like Shit. If we try to fix the little weirdness from the lumpectomy scar, which is already not a super great idea since radiated skin doesn't heal that well, I'll just end up with at least some other scar, that might heal like this one. So. That's backburnered until at least October anyway. In the meantime we can watch and see what this scar does.

OK. I have lots of thoughts and bits floating about in my head, but small short thoughts is all I can manage right now. Ciaozers.