It has been a really long time, I know, and I've wanted to write. Writing is so cathartic (not in my journal; out in the ether). But I'm getting divorced so I just can't write everything (because lawyers). And when I can't write everything, I somehow can't write anything.

But something broke that today. I had gone on this cancer retreat with someone I thought was a friend, about a year and a half ago. And I met this woman there. This amazing woman. And in the midst of despair over something  a couple of weeks ago, I reached out to her, to see if she had any energy or bandwidth to meet up. But of course. She's dead. I just found out today that she died in late June, a few weeks before I emailed her. And I mean, you know they're going to die. But then they actually do. And you just type in the name in Facebook to see if you can reach her through facebook because hmm she hasn't responded to your email and you see this announcement and she's dead and that's it. Cancer ate her.

https://www.facebook.com/events/268490190180662/

This is the picture she sent me of what she did when she found out that this particular new drug, Ibrance, "is working wonders for a bunch of folks, but my liver tumors thought it was lawn fertilizer." She did this to be able to breathe again:

So that's how I'll remember her, when I am done crying.

Also just want to add that if you die Beth Caldwell, I will fucking kill you. So get that fucking progression under control and untumorify your goddamn body because you know I'm not kidding.

​My own health. My MRI came back clean. So keep on trucking with the current medication influx. Next screening in 6 months, and on like this for a few more years. My sinus surgery helped a lot, but not enough, so I had a sleep study and I have sleep apnea (WTF?) and now use a CPAP, which is actually fine except it takes up a lot of space on my bedside table. I have something wrong with my pinkie, it isn't broken, but something is wrong.  I'm just ignoring it, but it hurts a lot on and off. And I might have to have surgery again for the stupid port scar, which was ugly but fine for a while after the revision, but which is now itchy as shit, all the time, and he injected it with some painful stuff to make that stop, which worked for about two days, and now it's itchy as shit again and also HURTS when I wear a workout bra. So if I do another surgery, they'll do three days of radiation on the incision after it to stop the keloids from forming. So yeah -- I'm putting that shit off, too. (Thank GOD I didn't have a mastectomy or I'd be like some torture-victim-looking mess.)

I've been really down recently. I wasn't sure why, until I realized - it's my end of "active" treatment anniversary. I ended radiation a year ago. And... I guess I I was hoping for more? More healing, more health, more energy, more distance. More distance, less cancer. 

It doesn't stop. It just goes on and on and on and on. It isn't a matter of wishing or hoping.

It's this: every morning, I hobble around like I am walking on hot coals, because that's what my feet feel like. This is how my day starts EVERY DAY. And also every time I've been sitting or otherwise not weight-bearing for about fifteen minutes, and then stand up -- although not as bad as mornings, by a long shot. I'm so used to my feet hurting all the time, I don't even hobble on them except in the morning. They just hurt all the time. This side effect is from Femara, which is helping make sure my cancer, if it is floating around, is more likely to starve and die instead of thrive and grow. So how do I leave cancer behind when it reminds me in the morning, every morning? After each meal? After each drive to get the kids? I can't move on from it, because it isn't moving on from me. I have to take this drug at least 4 more years. I guess that's better than five years, since it's been a year already. But then after that there's another drug for five years that has similar side effects.

It's also this: I feel like a tin man when I wake up. I have to move my joints slowly, because that's all I can do. While I hobble around on these feet. I have actually fallen down a few times, to my knees, because my joint won't unbend and my feet hurt too much to hold weight. 

It's also this: my lungs -- I either have radiation pneumonitis, or I had a respiratory infection that resulted in excessive restrictive response by my lungs. The restriction qualified as "restrictive lung disease" -- i.e., I couldn't get enough air volume in to measure. My radiation oncologist told me yesterday that he doesn't know which it is, and there is no way to know for sure (i.e., no test for it). But if it is pneumonitis, which would be unlikely given my radiation dose and the amount of time it has been, that's forever. And if it is the other thing? Well, that will happen every time I get a cold/chest thing now. So I can't work out much, because I can't really breathe. And breathing is pretty important. But the chest xray was clear, so no known metastasis yet. I'm the lucky one, I know. 

(I also have an injury to my coccyx, of unknown origin (other than probably related to childbirth) which is hard to treat, and lingers. So I can't stand or sit without pain. Yay. I can't pin this on cancer, and I think we've ruled out a tumor on the coccyx, but it doesn't help that my ass hurts too.)

It's also these things: I've gained 20lbs and my clothes don't fit. I still have ridiculous eyebrows that are at least starting to grow back, but they look nothing like they used to. I have a Koosh ball on my head masquerading as hair. These three things make it so when I look in the mirror, the person looking back at me is a stranger. In my head, I look like me, but in the mirror, I don't.

It's also this: I have hot flashes, not all the time, just mornings and evenings, and when temperatures change, such as when I go from inside to outside. I sport a nice bulgy scar where my port used to be that stares at me in the mirror. At least my other scars had the politeness to heal better since radiation peeled the skin off my whole breast, including those scars.

And it's this, which is one of the worst: I run out of energy at around 8pm, which is better than 7pm, but not as good as having enough energy to put your kids to bed without yelling at them. And then my sleep is interrupted by guilt, pain, anxiety, and hot flashes.

I was hoping for so much more on this anniversary. I didn't realize I was pinning any hopes on the one-year mark at all. But then it hit me that it had been a year. And I was hoping to not think about cancer every day, multiple times. I was hoping for my brain to work enough that I could accomplish something and feel competent again.  

I was hoping to feel alive again. Because I don't want to survive my life, day by day by day. And right now, that's what I feel like I am doing. This is what's real. This isn't dwelling. I can't move on; it's not moving on from me. This is my life every day. And I don't like it that much right now, really. I grieve. I don't know what else to do.

What a downer blog post. Sorry, ugh.

I feel like most of the time, I flit about from thought to thought. [I checked the definition of the word "flit" online, and it's the first definition, the one about moving swiftly and lightly like birds from branch to branch. It most certainly is not the Urban Dictionary definition of "flitting" -- seriously people?? Apparently it's not the things we know we know, or the things we know we don't know; it's the things we don't know we don't know that really get weird.]

I can't connect with my mind. It's very disconcerting. I'm a completely different person from the person who I was two years ago. I read blog posts sometimes, by other people who have experienced cancer or other distressing life events. And some of them reflect this disconnectedness, while others of them say that they feel much like the same person they were before. I'm not talking about the "dark gift" idea I've mentioned before, about how the forced glare into the depth of mortality shakes your foundation or any of the enlightenment mumbo jumbo I also like to talk about sometimes. I'm talking more deeply about identity itself. 

It is hard to explain where I fit in this spectrum of me. I'm still Natasha. But I have distinct feeling of loss of continuity. I have felt this way frequently about my past. I don't feel at all like the person I was when I lived in Iran, or any of the several other countries I moved about in when I was young. Or even the same person I was in New York, or Rhode Island. Or California. Do you know what I mean? I've felt like my life is a series of people, instead of a continuous, changing person? And then not from the moment of diagnosis itself, not from then -- but sometime between then and now, I've lost my connection with that person I was before. I can't tell the exact moment of the rift, but I find myself looking back over this chasm of personality. And I didn't change into this new person. I just ... stopped being the person I was, but showed up in this other person, with that former person's expectations. So I'm constantly surprising myself. I'm often an observer in my own new, different, complicated brain. I watch myself having thoughts and feelings that I don't recognize as my own, and then I meta-think about them. "Oh yeah - I guess these are my thoughts and feelings now. Who am I, who is having these weird thoughts, which I don't recognize?" It's so unusual, to me. I've had these dissociated moments where I watch myself. It was pretty literal during some periods of extreme stress - like on chemo days, for example, I'd just be watching myself taking the steps to the room, and sitting down, and getting poisoned, but I wouldn't FEEL like it was actually happening to me, at all. Like it was a play? Does that make sense? And that's a really healthy, protective mental trick, I think. But now I feel like I just have no idea who I am, sometimes, at random times of the day, not just during a stressful time. Because the way I interpret the world is different from the way I used to.... and it doesn't make sense to the "me" who is watching what's going on in there. It doesn't feel wrong, and it doesn't feel right -- it's just different, and not me. It's someone else. Who? Who though? I don't know who I am.

I miss myself. I miss feeling integrated, so that I didn't get these weird "out of sync" experiences at random times of the day. Life's hard enough, with all its weird twists, to have to do your best all day consciously about everything. It's exhausting to think about thinking. It's hard to lose that ease of just being without thinking about being. No more flow.

I was taking some stimulant medications to see if we could get my mind back in gear, but they made me really irritable. I'm already irritable from the treatment fatigue that isn't leaving anytime soon, and the menopause that has aged me before my time, and adding the neurochemical irritability was turning me into the wild witch of the northwest. So I'm not taking those any more, which has made me much more pleasant to be around. And again left me a bit at loose ends when I try to think in a straight line for a few minutes.

But I managed to get a couple of weeks of meal planning done successfully, so that's something. 

I'm also going to a couple of die-ins. I wrote about this on Facebook, but I know you guys aren't all on Facebook. I can't blog about everything, because that take a lot of mental energy. Facebook is thinking-lite. This blog post? I've been thinking about writing it for about three weeks. Anyhow: I'll be at the Seattle die-in on Sunday this week, and at the Washington DC die in on October 13.

Here is a copy-and-paste of my Facebook post about that:

It's interesting to hear people with young children talk about events, after you've had a life-threatening illness diagnosis. It gets surreal sometimes. I have mentioned this before, I know -- when I was first diagnosed, and I was sure I'd be promptly keeling over, I was overjoyed that I didn't. And that I got to see some amazing things happen. One of those amazing things was Kid1 going off to kindergarten. I was about to start radiation treatment when he did, and his first few months of kindergarten are/were kind of a blur. I'm still a bit unsure which parts happened when. But eventually I went through that... and eventually came out the other side of radiation... and slowly have come back to a more standard life "schedule" involving not going to to the doctor 5-10 times a week. And somehow, just like everyone says, I blinked and he "graduated" and is now a bona fide rising First Grader.

As I was walking with him and his bursting joy away from school, someone asked me a question about it, and I said he just graduated from kindergarten! And they say, that is wonderful. "But bittersweet too, I know, right?" 

Bittersweet.

I'm guilty, in the past. I watched the littles grow, and while I didn't want them to stay small forever -- I'm no masochist -- I loved my little babies. But I would definitely lament some of the rapid, unstoppable growth of my littles. Ahh the sweet tiny outfits! I love them as much as the next sentimental fool. [NB: Not enough to keep more than one outfit per kid as a memento, I am after all launching a new career as a professional organizer, we can't have that kind of precedent...] Oh those sweet milk-coma baby dead-asleeps. Oh that intoxicating new-baby smell [not that other smell tho]. And oh oxytocin infusions of happiness, I miss you. 

Some of that growing up "loss" did feel bittersweet. Not anymore.

Just pure sweet. Amazing, riotously happy sweet. I am ALIVE and I got to watch my sweet little grow a little bit more big, and I am just purely and blissfully HAPPY to see it. I watched him, and more than that, it didn't completely waste me physically to be there and do it, unlike some of the soccer practices I went to during treatment. I didn't survive through it. I lived it. Thank you, universe, for giving me this. Because I don't take it for granted. I can't anymore, I can't take anything for granted (and yes, that is really exhausting, thanks for asking). 

One of the things about having cancer young is that suddenly, you're the person, you know? That friend? "Oh my goodness, my friend has cancer." "Oh no, that's awful. Is it bad?" I'm that person. And a lot of people in my age group have those people, because although it's rare for someone as young as I am to have cancer, it's not like, THAT rare, that it NEVER happens. I mean, it happens to some people, and it happened to me. But like, it's still really unusual in our age group, right? You're talking to your friend, and you say, "My friend Natasha said..." "Wait, who's Natasha?" "You know, my friend with cancer I was telling you about last month?" "Oh yeah, right, go on..." 

But the really really awful thing, people, is this: now I can't have that conversation. I know SO MANY people with cancer now. It's awful. I can't say "my friend with cancer" because there are too many. I met all these amazing, amazing women during treatment. It's so empowering to know such vibrant people who are coping with the shitstorm along with you. It's great to have a group of people who get it, without a lot of explanation. Because I do like to talk, but man, I don't like to (e.g.) explain why something you said hurt my feelings. People take that shit so personally, and like, I get it, It's hard to know. But sometimes I want to have some discussions with people who don't say stuff like that, because no matter what the "intent" behind it, how much "love" they have, it still hurts my feelings. I just want to talk with MY PEOPLE sometimes, and when I want to talk about cancer, especially when I want to talk about how weird life seems to be now, how it seems like time is moving differently for me than others, how none of the puzzle pieces that were my life seem to fit together any more -- most of my people, frankly, are people with cancer, or people close to those people, like spouses, or people who've had other horrible shit happen to them, and who just get it. You know? So yea, I love these women. I love them. I couldn't survive this experience without them.

But I hate having to know them. I hate that they have cancer, and that's why I know them and that I have cancer, and that's why they know me. I hate that cancer has turned me from someone who knows one or two people with cancer into someone who knows and now loves lots of amazing, talented, vibrant, smart, snarky, loving, passionate women (and a few men, but not many, because boobs have been my focus) who have cancer. Because now I care. Not theoretically, but personally. I wish I'd never met these women, because it would mean that they didn't have cancer. And now? Now my heart breaks, all the time. All the time. It breaks when I hear that another woman -- who I know or don't know, frankly, it doesn't matter because now they all look like my friends -- has died of metastatic breast cancer. It breaks. It breaks when I hear that another of these amazing women has found that her cancer has spread. And it breaks when I know that some of these women? Their days are very literally numbered. And it breaks because I know that 30% [ish] of these women who, like me, had their breast cancer "caught early" will still morph into metastatic [read: incurable and terminal] breast cancer and die too young.

People say shit like, "We're all going to die one day." That's one of those things that I hate to hear, because ... well, if you can't figure it out, google it, and if you can't google it, go away.

But yeah, back to the point -- I hate having to know them, because they constantly keep me in the moment. 

I enjoyed every moment of graduation with Kid1, I didn't feel that bittersweet feeling that I'm familiar with from my pre-cancer days. I don't feel it. Because a dear friend of mine? Her goal is to live long enough to see her little girl go to kindergarten. Because today I saw Kid1 graduate, and as you all know -- that is not nearly enough time to have with your kid. I was looking at him, and I was thinking, man, if she gets to this moment, she'll have lived a year longer than her goal. And having one year less than that, as your goal? What right do I have to be BITTER? Even joined with sweet? What need do I have for such an emotion? Why would I want to lessen my sheer joy at both having been there for all my yesterdays, and still getting to be here today? No, thank you. I'll just take that sweet with a side of joy on a plate of happiness accompanied by a tall glass of contentment. For as long as I can watch those littles grow up. And as long as I can see that little crease near Craig's eyes when he's really happy. I'll take it. 

I read somewhere of cancer diagnosis called a "dark gift" and I do agree. I like that phrasing, "dark gift." Like with all traumatic experiences, with cancer there is an opportunity for post-traumatic growth. You know, I'm no fool. I'll take these benefits from the diagnosis, because it's not like I had a choice. I mean, I'd return the gift if I could, since I know that there is a risk it will kill me sooner than I'd otherwise statistically die. But. I can't, I didn't get that gift receipt with the pathology report, so since I'm stuck with it, I'll take the growth and the freedom from a lot of the "life chaff" that was stuck to me before and that I was hauling around. It's like I've released all the spiritual clutter. I worry less. [Part of this, I ascribe to my newfound ADD. Like, I don't have as long of an attention span, so I actually can't worry as much. Bonus?]

But I have this more "in the moment" experience because my friends are going to die. And because I'm untimely acquainted with my own mortality. I know how very, very, very frail my connection to this world is. I also know, in a way that I don't think translates in a blog post, how ridiculously frail your connection is too. I feel like I know it in a way you can't, unless something ridiculous has happened to you. Not necessarily cancer. But I have a few friends in mind who have had some horrible shit happen to them in the past few years, and they get it. 

So today I marked a milestone. And I am so happy. So, so happy, no bitter in this KoolAid. And I am meta-happy -- happy about the opportunity to be here at all, to enjoy this happiness. And I am melancholy, because I feel the connected pain of my friends, and their web of friends, and the whole network of young mothers like myself, ACHING to have the chance to just see their little ones grow up. 

When you know, you can't unknow. It changes everything. I can't put it all behind me, because the "all" is reality, life, transience, truth, meaning, and existence itself. 

So it's been a while since I wrote. I feel a bit like when I reread diaries from my youth. Every other entry is an apology to the diary, addressing its feelings of hurt and abandonment for not having been visited in so long. I am sooooooo-o-o-o-o-o-o-o-o-o sorry I haven't written in such a LONG TIME! I promise I won't do it again. Until next time.

I have a pretty good reason this time. And I think childhood was a good enough reason for those other times.

Anywhooo, I'm a bit over 6 months out of radiation treatment, which means I now qualify for some stuff. Stuff like people saying, aren't you glad treatment is over?! And stuff like, I'm glad you can put this behind you. And stuff like, the worst is behind you now. It's almost like they aren't reading my blog.

My brain hasn't decided to buy into these ideas and thoughts. I don't mean I haven't decided to. I don't spend much time thinking in the vein of those ideas, but if I did, I'd probably call bullshit really rudely on people. But I don't. I just don't spend much time thinking about much at all these days. Because my brain (as distinguished from my mind, although I haven't worked through that too much either) has been greatly affected by the chemicals they dumped into me last year, and are still dumping into me, and also greatly affected by the chemicals radiation causes to float through your body, and also greatly affected by the chemicals I no longer have adequate stores of because of those other chemicals, including hormones. Which are, you know, chemicals.

So, this brain o' mine is kind of running on a tank of fuel of the wrong type. Something like diesel in a regular engine, except I don't really remember anything about the combustion cycle from thermodynamics class, --- maybe one of the variables involved was "N"? N=0.85? Is that a thing? I'll ask Craig, I bet he kind of remembers. College is weird, they teach you a lot of things and then you don't use them. But it is fun learning things.

These flowers are pretty. I wonder what kind they are. Wasn't mamacon fun? Some of it was preachy, but most of it was enjoyable. I'm glad Kid1 (Am I calling him kid1? Older Kid? I can't remember, I have to reread a page in the blog and find out, but whatever). What was I talking about?

Oh yeah. I'm glad kid1 walked to school by himself today! I'm so happy to be alive to see him do that, when there was a time last year I was sure I'd be dead before he went to kindergarten. So glad to be able to see him growing up so far. 

Beth's hair is getting shaved again today. It's kind of giving me PTSD, except not really the "P" part. I can't believe she has to do this again and forever until she dies. I sure hope they don't over-chemo her, like if it isn't working, let's just be. But that better be a while from now, because I enjoy her being alive, as, I am sure, do her kids. And J. I hope she sees her daughter (now 3) go to kindergarten. J is so sweet. I mean, I barely know the guy, but that's plain on the face of it.

I can't work my head around this idea that either I have metastatic cancer right now (in which case I'm glad I'm taking all these drugs that make me insane), or I do not (in which case I'm doing all of this, including all of chemo but not including radiation) for NO REASON AT ALL. Such a mindfuck. 

What a great computer the Surface is. Maybe I should tell Sonja, she loves hearing kudos about MS products.

Those kids are really cute, look at that picture of my boys!!!

THIS. THIS IS WHAT IT SOUNDS LIKE IN MY BRAIN NOW. ALL THE TIME. ALL.

I've just been writing what I've been thinking, because I can't stop myself from rambling and from my wandering attention. It's not like I didn't have distractions BC. It's just that BC, I had a brain that could "buckle down" and "do stuff" notwithstanding distractions. I could decide that something had to get done, and do it. I can't now. 

So yeah - I sat down to write that because I'm six months out of treatment, I qualify for a clinical trial on the effects of cancer treatment on brains. And I was talking to my oncologist last week, and I said, "You know, the cancer was just a lump in my boob, and all the shit you guys did to me is what's made my life so fucked up," and she said, "You're right." And I said, "I had to retire, sort of." And she said, "Man. Let's try something. How about Aderall?" And I said, "Well, Dr. Dobie said I should wait to take something like that because this could all still get better in the next six months?" And she said, "I agree it could, but so what? This is really affecting your function. You take a pill, and then for a few hours, maybe you can do something. And then if it's better in six months and you don't need it, then you don't take it any more." And I said, "What about this study?" And she said, "If this works, you don't need the study. If it disqualifies you, then we have to consider that, especially if the pills don't work."

So yeah. Cancer-treatment induced ADD/ADHD? They're prescribing Focalin for me. It's a something-fetamine, aka a derivative of SPEEEEEED. It's like medically-controlled speed.

So yeah........ what was I saying? I'm going to get juiced up. Right.

AND THEN -- maybe I can finish up some of this client work I've been trying to get finished, and go on my sabbatical. And then I can go organize stuff for people or something, because physically doing things, instead of mentally doing them, is much more my speed right now. Pun.

THIS.

This is my brain right now. I barely remember everything I wrote, so I better post this before I reread it, get drawn in, and then find out it's 530p, I haven't picked up Dean yet, Craig's home, I have no plans for dinner, and I still haven't posted it. This is my life these days.

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.

---
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.

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 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. 

Major. Milestone.

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.

Humor.
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.

Help.
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.

Chai.
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?

Food.
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. 

Communication.
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.


Still.
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? 

Me, apparently.

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: 

• Vaginal dryness, burning, discharge, itching
• Bladder and urination: burning, urgency, infections, incontinence
• Intercourse: bleeding, discomfort, decreased lubrication
• Vagina itself: Shortening and tightening of the vaginal canal

It's a party down there. Or, erm..... not a party. Most of the treatments for vaginal atrophy are hormonal. You can't use them if you have a history of breast cancer, except sometimes your oncologist says you can.  Oh....kay.... ??? There are also other things you could try, like physical therapy and vaginal dilators.

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. 

Speaking of medicines, I have been amazed at the arsenal of pharmaceuticals that have invaded my life. I find it fascinating and am going to share it all with you. I am amazed I can even keep it straight, but I have purchased some nifty pill-dispensers for the various purposes. Thank goodness I don't have to be concerned about HIPPA when I am the patient disclosing the information! Here goes, in kind of random order:

Pre-cancer: daily vitamin D supplement for deficiency. occasional unisom for sleep. 

post-cancer:
Daily vitamin D for deficiency.
taxotere and cytoxan - these are the chemo meds we're using. (not pictured)
lots of saline solution to push everything into my heart.
Unisom ain't cuttin' it. Tried ambien. Ain't cutting it. Now using clonazepam at night. Ativan as needed for anxiety, and in a higher strength for the nausea, if and when it comes.
Also, ativan by IV during chemo for nausea and to calm me the fuck down more. (not pictured) Aloxi for nausea, by IV during chemo (not pictured)
Emend for nausea, by IV during chemo. (not pictured)
benadryl - to prevent allergic reaction to Taxotere (not pictured) castor oil - to rub on all the scars to help them heal better.
Emla cream (lidocaine/prilocaine) to numb up my skin above the port, so that they can inject lidocaine with less pain, so that they can put the fat ass needle into the port with no pain. I gotta say - didn't feel that fat ass needle go in.
Lexapro for anxiety and to combat loss of appetite, which has me down 10lbs already. I understand chemo bloat will bring me back those 10lbs in short order.
dexamethasone (steroid) to prevent allergic reactions to Taxotere, one of my chemo drugs. this is for three days (chemo day, day before, day after) and this really fucks up my sleep.
Hydrocodone for pain.
Pepcid for excess stomach acid. Prochlorperzine for nausea if/when.
gabapentin for nerve pain (still from original surgery). ondansetron (zofran) for nausea if/when.
advil for pain, if/when.
colace and ployethylene glycol (miralax). if you have to ask what these are for, you're lucky.
L-glutamine. A LOT of L-glutamine. It might help prevent or alleviate peripheral neuropathy that is a side effect of Taxotere. It may not.
Neualsta - a shot in the belly the day after chemo, so that my bone marrow tries its best to make more white blood cells after the chemo poisons tell it to stop doing that. (not pictured)
Claritin - to alleviate the deep bone pain that will result from the neulasta.
biotene - mouth rinse for when I get dry mouth and sores from the chemo meds. I haven't opened this yet, but I feel like I'm about to need to.
omni-gel flouride gel - to give my teeth some extra protection from the dry mouth effects on tooth enamel. digestive enzyme
lipids (basically fish oil) multivitamin/mineral supplement calcium/magnesium supplement.

These last four are from the naturopath. Altogether I'm popping 12 of these naturpath pills a day. I find it a bit sketchy, because they are really expensive and he owns the company that makes them. But they are safe for immune-compromised people (like me) and my surgeon and oncologist both said that he's a great naturopath and these things will make my systems keep working while the drugs battle the cancer... and I also learned that they are recommended to cancer patients by other naturopaths who don't have a conflict of interest in making money off the brand they prescribe... so I basically feel like I have to take them, because right now I'm taking anything that gives me a 0.1% chance of feeling better.

Some of these at night, some in the morning. Some with meals, some on an empty stomach. Some in the "middle of your meal." Good thing I like being organized, because this is stretching even my powers pretty tight.

OK, chemo brain. Ciao.

Facebook post -- April 19, 2004
Me: But the port still hurts. It's been a week. And I just slept three hours and I ache all over. *whine* *grumble* Craig: Well, yeah. I mean, it's going to take a while. You're not Wolverine.

Through the Wringer. — April 23, 2014
Logistical stuff first, then filling you in on the haps:

Meals: Round 2 starts May 7. The freaking meals have been awesome and appreciated and really rock our world. I just created requests for May 7-13 right here on caringbridge again, in the planner tab. Thank you in advance for signing up to save our evenings.

Jazz up my ears!: (cross post from Facebook) Miss me? Come say hi! Darcy and Amy are graciously opening their house (which is near my house) up on May 4 in the afternoon for people to come and rub my fuzzy and/or bald head, and if you like, jazz it up with something sparkly. Drop in some time between 3 and 6. If you think you might stop by, please let us know in the Doodle (link below), so that we can be in the right range for snacks etc. (No need to respond with time you think you're coming, that you can't come, etc., it's really casual. Location details in the Doodle.) Feel free to tell people you're keeping posted on my haps who might not be linked up with me online but might want to stop by. I'd love to see people, and I start round two (of six) a few days after this par-tay and then, I will not want to see any of you again for a while. [link removed] 

The Haps: Wow, that was a shitty week.

On the plus side, I can lay off the L-glutamine now until the next cycle, which is a relief. Yay! Also, I am weaning off the gabapentin (should be done by week's end) because my arm nerve pain is abating! Now it's like a big ole bruise from armpit to elbow, but before if a feather touched my arm, it felt like it was being jabbed with a red hot poker. (Note that my arm isn't actually bruised - but my nerves are still really confused.)

On the down side, I had some poison pumped into my heart with predictable results. You know that scene from the Princess Bride, where Count Rugen has Wesley in the torture contraption, and he turns the dial up to the lowest setting, and Wesley writhes in pain, and then Count Rugen says, "As you know, the concept of the suction pump is centuries old. Really that's all this is except that instead of sucking water, I'm sucking life. I've just sucked one year of your life away. ... What did this do to you?" and then Wesley just moans? Well, last week felt like the OTHER part of the movie, where Prince Humperdinck turns that fucker up all the way to the highest setting and kills Wesley.

One afternoon I lay in bed for four hours, and I could feel my bones. I don't mean touch them from the outside and think "hey that hard thing under my skin is a bone." I mean, I was internally aware of where each bone in my body was. I felt that I had multiple plates of bone in my skull. I could feel the presence of two bones in each forearm. I could feel the existence of individual bones in my body from the inside out, as bones. This process was not pleasant, was very deep, and it lasted most of the week. I went to bed at 630 a few times. It didn't seem to help. Nothing helped but the passage of time, and sometimes my walk helped. A bit. I felt so tired for days at a time, I couldn't even read my Regency romance novel. Regency. Romance. Novel. You realize how little brain power this takes, people? I didn't have it.

I had various other ailments, including thrush (yay! more medicine bottles!) which according to my oncologist, should resolve any minute now. Because this is magic week. Today I feel pretty good (!!!!!). I still have bone pain, and fatigue, and overall achy miserableness, but I have energy. It feels like magic. Like my vitality was suddenly taken and is being rather (but not quite as) suddenly restored.

I had blood tests done today, and my white blood counts are through-the-roof awesome. The oncologist is excited, because she explained that although the blood counts will stop being quite so awesome from cycle to cycle, the fact that they are so awesome now means that my body will hopefully be able to sustain the full six cycles she wants to give me (rather than having to stop at four or five cycles).

My other doctor (Dr. Zucker, who makes me happy just by existing) is pleased that I walked for an hour each day. Some days I walked more, which is a no-no. An hour tops, because my body's signals aren't the same as before, and we don't want me to misunderstand this feeling of regained strength, overdo it, and crash lower than low. I can't recover like you reg'ler folk.

Tomorrow, tomorrow - tomorrow if I feel up to it, I might go to the gym again. Craig is planning to wake up at his normal time and go to work (out of the house before kids wake up). I will take the boys to school. This will mark the first day, since March 10, that our daily routine will resemble anything like our pre-cancer routine.

I actually think I might do some legal work next week. Last week the thought crossed my mind several times that there was no way my brain could ever function again. And right now I'm thinking, where was I on that particular client matter? This, my friends, is progress!

The next cycle starts May 7. I'm not excited about it, but I am excited to kill more possibly roaming cancer cells. I know a bit more what to expect, which is in some ways better and in some ways worse. It's going to be harder because the fatigue will be worse. It's going to be harder because I will start looking outwardly like a cancer patient next week when my hair goes. I don't know how that feels yet. I'm ruminating on how that feels. I've been thinking about it as I go for my walks and pass people - they don't know I'm a cancer patient, but next week, if they pay attention, they will guess.

Most people don't pay attention most of the time. So most people might not notice. But when you're feeling super duper crappy it is really amazing how much a nice smile or a nice gesture make a difference in your life. (Like at the grocery store last week, someone offered to walk my empty cart back at the exact moment that walk back to the cart corral was looking like a mile.)

I know some people will be extra nice to me once I start looking like a cancer patient. Do me a favor this week - be extra nice to someone who doesn't look like a cancer patient. Because you never know.

Facebook post -- April 25, 2004
I feel f*cking fantastic today.

Facebook post -- April 29, 2004
I do appreciate the flowers y'all have been sending. But this here haircut is the flowers Nigel A[.] sent. L.O.B.!

Under construction. You expect more today? Here is a good quote. We'll discuss it later.

"Listen: We are here on Earth to fart around. Don't let anybody tell you any different!" -- Kurt Vonnegut