Tuesday, June 26, 2012

Day 783: One of Those Days

Boy am I having one of those days. You know what I mean, right? One of THOSE days! One of those days where I:

Sit in my windowless office at work feeling like I’m crawling out of my skin, with tears rolling down my face for no discernible reason, except that I am experiencing these new-to-this36-year-old woman mood swings brought on by hormone changes from my second puberty, and because I am unaccustomed to such displays of emotion, especially in inappropriate settings, I begin to think about all kinds of things that just make me more sad and nostalgic and depressed and really, just verklempt, things like:

The age I was when these moods would have been normal, and I was just living so completely, and it seemed like everything was new--my body and boys’ bodies and cars and friends I knew I would never keep and getting drunk and that whole process that is just so clich√© and so real, that time when you become yourself—and the idea of a future and how hard life was, in a real and adult way even though I was really just a child

The childhood I had, or didn’t have, the way I see children who are so at home and confident in their bodies and their minds, and the things that I learned having never felt that way from the time I was six years old

The fight I had with my husband this morning that I didn’t know how to fix nor feel inclined to fix, the conversation I had in my head that began, well, it is his fault, yes but who cares what is the point in sitting on the train next to your partner and lover in silence, and being too stubborn, with a fuse too short, and too much baggage weighing down everything we’ve been through and knowing I should change and just forget it but also knowing that I’m too stubborn and I won’t

The fact that I just don’t do things the right way, the knowledge that I love to be alone even though I have those beautiful children and a young loving husband and friends whom I will meet with on several nights this very week, and that I will just have to tell myself that my kids like to know that I’m there, and that for us, “there” is relative, they don’t necessarily care where or what I’m doing but they want to know that I’m THERE, that I exist, that I come home to them, that I will always come home to them

The guilt I feel over how much I’ve needed a vice over the last few years, and how bad I am at achieving that, so rather than go for something really good, like an affair or a gambling addiction or a drastic and irrational career change, I have gone for the one thing I shouldn’t do and have started drinking regularly which for me means like one drink a day, an amount that even my mother approves of, since it helps me sleep and it is oh so hard for me to sleep, showing that I’M NOT EVEN GOOD AT THAT, and that vice has led me to gain a few pounds, literally, as in two, and that is the OTHER thing I’m really not supposed to do, damn weight gain, and because even that two pounds bothers me for various reasons I know I need to just stop and GODDAMN IT WHY CAN’T I JUST HAVE A VICE?!

The conversation I had the other night with a woman who is at the early stages of dealing with this damn disease, who doesn’t know when she will get surgery, or if she needs chemo, and is hoping she can escape it all, and I tell her that I wish she could too but we both know that she can’t, and I say just think about it it’s like any other disease that people deal with, you take medication for things like epilepsy and diabetes and heart disease and this is just a version of that, look at me, it’s two years later, you are just beginning but it does get better, and she says well maybe I could just be like Steve Jobs and do alternative treatments and I think to myself, Jesus I hope he is not the goal, and I say out loud, well think of it this way, surgery and chemo suck but it’s better than being dead, and she laughed in such a real, appreciative way, she slapped the table and said thank you, I will remember that on my bad days, I will tell myself, ok, this sucks, But it’s better than being dead.

The thought that of course this is better than being dead, it all is, all there is in the world are things that are better than being dead, but if I could I would dedicate my life to the opposite of feeling dead and just feel alive alive alive all the damn time and no it's not cancer that made me feel that way, I have always felt that way as long as I could remember, but I've had to get that extraordinary feeling within this very ordinary life

Yeah, one of THOSE days. So I wrote this. And, this. As always, thank you for reading. I guess they can't all be funny. And I only have about 36 hours a month where I am even capable of being this deep, so it won't be long till I'm back to talking about completely inappropriate things. Promise.

Conversation with a Bald Eagle
by Katy Jacob

How strange to learn that eagles truly have faces,
in the same way our children have faces.
What is normally but a silhouette is now close enough to study.
I can see the beak protruding from the white head,
and it could be a picture, but for the circling.
Circling so gracefully, the world seems to pause.
I am mesmerized, rooted inside the time he has made.

Then I come to and paddle the boat faster,
away from the loons I am sure the eagle seeks.
I hope he will stay near me; I am lost in fascination.
And sure enough, he follows, getting closer.
There are no sounds but that
of my feet on the paddles and the wind in the water.
The loons are in hiding.
There is no one but me on the lake.
I slow down, stop, and wait.

He hovers, and it occurs to me
that he is thinking, how strange to see
that egg turning towards me,
why is that small bird inside such a large blue nest?
I think of the phrase “bird of prey.”
I am in limbo, in short sight of the house,
but I will need to fight the waves to get there.

We seem so small to one another,
given the distance between air and water.
Neither is sure of the other’s intentions.
Eventually, I begin to paddle home,
and he leaves me, heading north.
It is good to come to such an understanding.
I realize we all feel this alone.

It is worth knowing the right names for things.
One bird’s meal is another’s final mistake.
One man’s symbol of hope is another’s death omen.
It is important to understand that the one is a privilege,
the other a certain promise.
The rest is just air filling in the circle,
helping us to forget what lies right outside the perimeter,
in the space where we are and we aren’t.

Monday, June 18, 2012

Day 775: He's Dad Enough

I figure if putting the things I’ve written on this blog out there on the Interwebs hasn’t already blown up my computer, I should just keep going. So, I’m going to share an interview that I just did with my husband Gabe, who turned 37 a few days ago and greatly enjoyed his 7th Father’s Day yesterday. Why the interview, you ask? Well, because today he had a vasectomy. At Planned Parenthood. And oddly enough, no one was threatening to firebomb the joint while we were there or anything like that.

I've put some stuff on this blog for the sole reason that it didn't seem like anyone else was talking about the things I really wanted to know and understand about cancer, and this fits right in with that theme. This time, maybe some guys will benefit from the information. If not, there are at least two people who find it entertaining. Gabe's pleased that I'm letting him talk for a change, even if I am posting pictures of him all doped up on painkillers.

Right after Augie was born, when we were both half dead from sleep deprivation, Gabe said he wanted a vasectomy. I thought it might be a little soon, and that we should make that decision when Augie was a little older. Then, he was a little older, and I found out I had cancer.

And we didn’t know what the hell to do, in general, much less about family planning.

I figured there was no use in Gabe getting snipped if I were to, say, die, and we also had no idea if and when I would come out of my chemo-induced menopause, so the operation would have been a waste then too. I was in a strange situation for a woman with breast cancer. Most women are post-menopausal. For those who aren’t, the vast majority are estrogen positive, and are on tamoxifen or other drugs that often keep them in menopause for five years. But since I’m triple negative, I took no drugs after chemo, and I knew it was possible that I could get pregnant, even though that could have disastrous consequences. Even after menopause left me and my hormones came raging back, leaving me in this perpetual adolescent state of uber-fertility and libido, I didn’t want him to have the operation. I mean, he’s still a fairly young man. If I don’t make it, I want him to be able to have kids with someone else. I told him this about a year and a half ago and he became absolutely enraged with me for giving voice to that idea. I still carry this strange guilt about the whole thing, though.

Well, the whole point of having control over our bodies, sexuality and fertility is that we should be able to have control over those things ourselves. And Gabe wanted a vasectomy, so my guilt is really beside the point. This is the kind of thing women have been fighting for, to keep men out of the decisions they need to make for themselves. And in our situation, it makes perfect sense. We are happily married and we have kids—one of each, cute and smart. It would be extremely dangerous and potentially deadly for me to get pregnant again, as my cancer recurrence risk would go up, and then there’s the pesky issue of leaving Gabe with three kids to raise alone as opposed to just the two. And we could always adopt; Gabe has been supportive of that idea, as his mom and aunt were both adopted. But I don't think we would qualify as adoptive parents with my health history, and that would still leave the specter of him raising more kids alone. So, I think we are really done having children, which is a reality that is both unfortunate and a relief.

Those are my thoughts, however. It’s his body and his sperm, so I’m letting him have final say. Here goes nothing. Good thing neither of us is interested in running for office.

K: So Gabe, why did you decide to get a vasectomy?

G: There were many reasons. I love you and I love making love to you and I don’t want to get you pregnant accidentally, especially not anymore, not after cancer and definitely not after Augie.

K: Why you though, why wouldn’t I take care of the birth control situation?

G: It’s only right that I volunteer once to do a surgery that would be much more difficult for you to do, especially after all the surgeries you’ve had. You can’t take the pill or do other hormones so it’s the least I could do to improve an unpleasant situation.

K: Are you sad about not being able to have more kids, with me or with some other potential woman after me if I don’t survive cancer?

G: You’ve already survived cancer and you are going to survive for a long time. I can’t imagine having children with anyone but you. I can’t imagine us having any other child more perfect than the ones we have. (Gabe is tearing up). I do feel sad in that I feel like cancer has forced our hands and we will never know what we would have done otherwise, though otherwise I might have done it long ago. But we do have this big house now and I can imagine us filling it with kids, if we won the lottery or something. There are circumstances under which if you hadn’t had cancer, yeah, maybe we’d have a house full of kids running around and going crazy and pissing us off. But this was the right time for the right reasons. I’m a little wistful but I’m good with it.

K: Do you think you’ll regret it?

G: No, never.

K: OK I won’t ask you many more emotional questions. So why Planned Parenthood? I knew they offered vasectomies since my dad had one there when I was a baby, but not many middle class families think of them for men’s needs. In fact, when I told my ob/gyn the plan, he was surprised and said he didn’t think “they dealt with men.” But the truth is they’ve been offering vasectomies for 100 years.

G: Because my insurance wouldn’t cover a regular urologist, as they don’t cover voluntary sterilization. It would have cost about twice as much to go through private practice. Planned Parenthood asked me why I came to them and I told them I knew other people who had done it, and I tried to go through my insurance but they wouldn’t cover it, which is ironic because if I got my wife pregnant again, and she had the baby and got cancer again, it would cost hundreds of thousands of dollars to have the kid and to do the cancer treatments. I’d like to send the receipt to the insurance company and bill them for the money I saved them.

K: OK so let’s get down to business. What did you have to do to prepare for the operation?

G: I had to do a consultation visit to learn about the procedure, check my medical history, and make sure that I was doing it for the right reasons and wasn’t being forced into it. As one of 15% of men who have had a medical problem known as varicocele (varicose vein in the scrotum), I had an operation on the left testicle almost exactly four years ago. I had known about it since I was about 19, but it was affecting our ability to get pregnant after Lenny was born and I was in pain and discomfort all the time. There was a slight chance that because of that surgery they might not be able to do the vasectomy at the clinic but that turned out not to be the case. That varicocele surgery was under general anesthesia and I don’t remember much of it. I was apprehensive about it and that turned out ok so the vasectomy seemed like much less of a big deal. The most annoying thing I had to do to prepare was I had to shave the underside of my penis and the front of my scrotum. I just shaved the whole damn thing though and it took forever.

K: Let’s take a sidetrack here and you can tell everyone about the conversations you held at the clinic about shaving your balls.

G: Well, after I complained about how long it took they told me I did a very good job. In the course of the whole thing I kept telling them I was most annoyed about shaving my balls. I said they should have a support group for how to do it right. Then when I was leaving I saw the guy after me coming in. I told him he looked good for a guy who was about to have an abortion. Everyone cracked up; the doctor told me that was the funniest thing anyone had ever said in that room. And then I asked the next guy about the whole ball shaving thing. Apparently this guy shaves once a week so I told him he should lead the support group. We were bonding.

K: I think there are about 100 people who just unfriended me on Facebook after reading that. But anyway, what was the procedure like?

G: When I went in they asked me if I was there for a vasectomy and since it looked like a salon with all the chairs, I said I was there to get my nails done. Then they needed to make sure I was there by my own choice. They asked me why I chose a vasectomy and I said because of this wonderful thing called cancer. My wife had breast cancer and she isn’t supposed to get pregnant again. They asked if I had kids, and I said I had two beautiful smart redheads and I DIDN’T WANT ANY MORE OF THEM. Then they asked if I wanted to go under or have anesthesia. I asked what most people do and they said that some people just walk away or even drive themselves home and some people have more fun on anesthesia. I said oh I guess my wife didn’t need to take the day off work to drive me home, and I think I’m pretty fun anyway so I’m going to not do it. I told them that when I had the varicocele surgery I was under general anesthesia, and I had missed the part where the doctor told me that one of the veins he removed was so big he could stick his finger through it. I didn’t want to miss anything good like that.

K: But they must have done some local anesthesia.

G: Yeah there was some topical stuff applied. They gave me an IV but I didn’t use it. I told them I thought IVs were to make their jobs easier, and I told them about how you refused to have a port. But they got my vein on the first try because my veins are so huge. Anyway, then I went to the operating room and I sat on the table and asked if I should pull my pants down, and I started screaming about being afraid of stirrups, though of course there weren’t any.

K: They must have loved you.

G: Well the doctor had already high fived me, because at the beginning they explained that I would have to come back for a semen analysis after ejaculating 20 times to make sure the operation worked. At the consultation, they had told me 15 times, but not to do it all at once. So I told the doctor that, and asked who these people are who are going to try for 15 at the same time, and she said, can you imagine the kinds of men that come in here? I said, well I know enough to think that about 90% of all men should just be euthanized, at which point she high fived me.

K: Another interjection. Do you think you’re one of the 10% that deserves saving?

G: (long pause). I’ll defer that answer to my lovely counsel, also known as my wife.

K: Good answer! and I suppose you are. Anyway what about the procedure? What did they do? Did it hurt?

G: She started moving stuff around down there and told me it might pinch. She used something that was like the scrotal equivalent of a staple gun. It didn’t hurt. Then she warned me again and I told her to just do it and stop warning me. After the staple gun it felt like she jammed something right into my testicle, which did hurt. Then I got more local stuff, and eventually they cauterized the vans deferens or something. The whole surgery took like half an hour.

K: Yeah I was surprised to see you walking out of there on your own so quickly. How do you feel now?

G: I feel ok though I need an ice pack for my balls. Can you get me one?

K: Yes dear.

K (back with ice pack): So any worries? About pain or sex or anything?

G: The biggest pain so far was when they tore the IV tape off my arm since it’s so damn hairy. They said that 4 out of 1000 men who get vasectomies lose the ability to maintain an erection without any physiological reason so it’s more of a psychological thing related to the fact that there are these morons out there who think that if they can’t get a woman pregnant they aren’t manly or something. They are in the 90%.

K: So, you feel just as manly?

G: Yes, I do. I feel more manly, actually, because I did it without anesthesia.

K: Yeah, way to man up. Are you excited about the prospect of not having to use condoms soon?

G: Absolutely. And I’m excited thinking about how fast we can get to that 20 mark.

K: Right. Anyway I’ve talked about condoms my fair share in this blog. I’m a fan, for a lot of reasons. But from a guy’s perspective, what did you think about using them? I mean except for the 9 months I spent pregnant, we’ve used them continuously since Lenny was born. Did you think they were annoying or that it didn’t feel as good?

G: Putting them on and taking them off is annoying. But with the newer super thin condoms you can’t tell that much. And it’s sex, and it’s sex with you, so you know, it’s awesome.

K: I’m kind of looking forward to not having to worry that people will find the condoms that you stashed all over the house, just in case. Like the ones in houseplants.

G: Thanks Kate. Now no one will ever want to visit our house again. Maybe you shouldn’t say that in the blog.

K: Too late. So should I be concerned about you cheating on me now that you don't have to worry about getting anyone pregnant?

G: That is a completely ludicrous question. Though I was going to ask if you care if I go to my 20th high school reunion by myself. No seriously, you are more than enough woman for me.

K: Good to know. Any last thoughts?

G: Yeah now there’s one less thing for you to nag me about! And I love you. And it was better than CATS. I would do it again.

K: Love you too, babe. Happy Father’s Day. I guess you are already dad enough.

Thursday, June 14, 2012

Day 771: For My Husband's 37th Birthday

Today is Gabe’s 37th birthday. We have a crazy day planned; I will rush home from work to get ready for a formal event for Row4Row tonight while he runs around and takes Lenny to gymnastics (where she is being evaluated to see if she can bypass the next few levels and begin to be groomed for the competitive team; how did this happen? I can’t do a cartwheel. When I was a kid I played basketball and floor hockey. Who is this child?), drives home, waits for the teenage babysitter, and then gets ready to meet me so we can go out alone for a late dinner at a steakhouse with a rooftop. I don’t think he’s happy with his role in this plan, but, you know, he’s doing it. Even though it’s his birthday.

He is impossible to buy presents for, and he asks for boring things like socks and rain boots. In fact, his gifts were so boring this year that I didn’t even bother to wrap them; he took them out of the bag this morning after the kids and I sang Happy Birthday to him and he blew out a candle I stuck in a blueberry muffin. I am not that good at sentiment, so I will give him a card from the store and it won’t be filled with accolades and proclamations of undying love, unlike the cards he gives to me. I am hosting a party tomorrow, and I will bake him a cake and make his drinks. I have one surprise for him but it’s a surprise, so I won’t outline it here. The present he is most excited for is the dress I will be wearing tonight. I was trying to figure out what to wear and I tried on a bunch of different things, including this $20 sequins-filled number that I bought in the juniors department at Carson’s at some point that has been sitting in the closet because, really, with my life, where would I wear that? Gabe just about fell over when he saw me, and said that me wearing that would be a great birthday present for him, though I shouldn’t expect him to be able to hold a conversation with me or make eye contact while I’m in it.

Ah, my husband, with his metabolism and hormones; it’s like the tenth grade up in here sometimes.

And that is one of the things I do appreciate about him. There is no pretense with Gabe, no attitude. He has a terrible poker face. He’s cheesy. Sometimes he’s really shitty. He doesn’t know how to hide it. And he adores me, and lets me know that, which can drive me crazy, since I’m not very mushy, but it’s also quite endearing. I’ve said this before—Gabe and I fight. Cancer made that worse. We might be that couple that annoys other grownups because we act like teenagers around each other, but just because we have that passion doesn’t mean that I don’t have moments when I want to throw in the towel. When you’re married, you always have times when you’re like ships passing in the night. There’s so much to do, especially with two working parents, and sometimes life is just filled with those things. And then you get shitty with each other. He gets crabby about nothing and snaps for no reason. And then I yell, and he pulls away, and then we become really annoyed with each other because we have such different fighting styles. Or, we fight, walk away from each other, then he falls asleep and I’m all OH HELL NO YOU AREN’T SLEEPING!

Yeah, sometimes it’s like that.

Not most of the time, though. Most of the time, I do realize that it would be hard for me to be married to someone else. I’m challenging in a way that requires someone who is not only up to the challenge, but intrigued by it. I have always known that about myself, and I’ve managed to find guys who fit the bill—at least for a while, sometimes for years. This guy bought in for forever. That took courage, right? And it’s not like he’s had the same experiences with me that other couples in their 30s have. You know, what with the cancer and all.

So, here’s my chance to do what I never do and list some things I love and appreciate about my man. Read it baby, because you know I will not be bringing these verbal compliments into regular rotation. For better or worse, I’m a terrible ego-stroker. But here goes:

20 Things I Like About Gabe

1. His willingness to make major decisions as if they are minor decisions (Don’t want to live together if we’re not going to get married? OK let’s get married! Don’t think I want to have kids, but wait I would definitely have kids with you! Buy a house? Become landlords? Sure, why not, what’s for dinner?)
2. His total lack of daddy issues, even though he has 5,000 reasons to have them
3. His appreciation and understanding of luck
4. The way he will always eat, shop, and consume natural resources as if he is on the edge of starvation and abject poverty, no matter how far away we are from those things
5. The fact that he’s “that dad;” the one with six kids climbing on his back, who has squirt gun fights with neighbors, does cartwheels down the hill, plays shark attack and generally roots around on the floor or in the mud while I do something else
6. The fact that he can sing, but he can't dance at all, but he does it anyway because he just doesn't care
7. His nurturing side, because I’m not that good at it, and someone in our house has to coo at the kids and cry at Hallmark commercials and call people sweetie
8. That he is such a homebody (though that can be a problem sometimes) and so into spending time with the family that his idea of an awesome night is to catch lightning bugs with the kids and then watch Hawaii 5-0 on the couch while holding my feet in his lap
9. That he doesn’t have any addiction problems (seriously…what a bonus! I could not deal with a hard-drinkin man!)
10. His faithfulness, which I never question or even really think about, even though he still has that crazy libido, which is also nice, I admit
11. The fact that he’s like the male version of the hot librarian, kind of dorky, refuses to wear contacts, etc., and then he takes his glasses and his shirt off and people are like, wait, who’s that? Where’d that come from?
12. His interest in things that are different from mine, like astronomy
13. His subscription to the Economist (though really, can you recycle them at some point? WHY ARE THEY ALL STILL IN MY HOUSE?!)
14. His understanding of nontraditional families and acceptance of extended family drama
15. His company during football season, and the way he laughs at me during March Madness or other sporting events when I become a crazy person, yelling at the kids to get away from the TV so I can watch the game and saying hey baby, I’m not leaving the couch so you need to make dinner, ok?
16. His reluctant acceptance of all my shoes and how good he is at painting my toes
17. His ability to do awkward physical things, like carry enormous, heavy and unwieldy appliances and sinks etc. into our house, or the way he can contort his body into some strange shape and somersault through a small window when we get locked out of a house
18. His lack of concern with needing to appear manly, down to the fact that he can actually give other straight guys compliments
19. The fact that he can do pushups with me lying on his back (even if it’s only a few)
20. The way I’ve learned to get over the fact that Lenny will always be a daddy’s girl, and Augie will in some ways be a daddy’s boy, because I am really happy that they like their dad that much.

So next time you get insecure or worry that I will leave or wonder why I love you, Gabe, you can read this back to yourself. Because my answer in person will always be, I just do, ok? NONE OF YOUR BUSINESS!

Happy birthday baby.

Monday, June 11, 2012

Day 768: Two Years Cancer Free

Last Monday, June 4, 2012, I posted a blog about triple negative breast cancer. I did a lot of other things last Monday as well:

I went spinning at 5:30 in the morning
I had a highly productive day at work
I made it to the gym at lunch
I cooked dinner for the family
I convinced Gabe that I needed to take a walk right after dinner while he bathed the kids
I sang to my kids and read them books before bed
I mixed up a perfect Tom Collins and collapsed on the couch for a few minutes to wind down
I made love with my husband and still got to bed early since I had to wake up at 4 the next morning to get to the airport
I had trouble sleeping, as I often do; something was tugging at the back of my mind

I completely forgot that exactly two years had passed since I had three cancerous tumors removed from my body

It's a week later, and I am staring at the entry on my desk calendar for last Monday that reads "TWO YEARS!!" and wondering how the hell I skipped over that.

It's a week later, and I really wish I could go back in time and tell myself two years ago that it would be possible for cancer to be both in the foreground and the background, for it to be there and not there, for it to be on the list but so far down that other more mundane things would take precedence.

It's a week later, and I am amazed that Gabe forgot, that my mom forgot.

I mean, every year, on October 11, I find a way to mark the anniversary of my car accident. 2012 marks 28 years. I have never forgotten.

I remember important days--birthdays, death commemorations, anniversaries--even the smaller ones like first dates, engagements.

I'm astounded.

I'm thinking about this morning, when I was washing the dishes, still sweaty and hot from spinning, and I looked up and saw a note on the window above the sink, written in that slanted, lefty handwriting: "You made me smile."

It is true what they say. This too shall pass. All of this--all of those things, small and large, important and insignificant, that make up our days and our years, shall pass. It is both a blessing and a curse. These writings--on calendars, blogs, pink post-it notes left around the house--might be the only reminders that we have of what was real.

Two years pass, and it's nothing, and it's everything. And you don't even realize what has happened, but really, a lot of things have happened. It's hard to know whether to laugh or cry.

And that's it, isn't it? That's the question. Is this a tragedy or a comedy?

Or a mystery?

Monday, June 4, 2012

Day 761: Poor Redheaded Stepchild (TNBC)

Breast cancer is pretty damn common. Too common, really. Everyone knows someone with breast cancer. Every woman fears mammograms, fears finding a lump. Young women with breast cancer can feel very ostracized even inside the so-called “breast cancer community,” which isn’t a real THING of course but more of a kind of absurd concept. Women our moms’ age with breast cancer feel sorry for us; doctors do awkward stuff like cry when they see pictures of our kids; we have fertility issues and different career challenges due to our stage in life; people, including other survivors, can become disturbingly obsessed with what cancer has done to our looks. So it’s weird, being in this 2% of women with breast cancer who are under 35 at diagnosis.

It’s even weirder to be triple negative.

Now, I’m not going to claim that being the poor redheaded stepchild (in my case, maybe literally) of breast cancer is harder than being one of the truly marginalized—the metastatic survivors. That is a whole other level of difficult and a whole other level of bullshit. So let’s leave that aside for now. But, as hard as it is to have breast cancer at such a young age, it’s harder to have something that isn’t well understood. It’s tiring being in the 15-25% (even that wide range shows you that the medical community is unsure about what triple negative really is) of breast cancer patients with a “rare,” “aggressive,” “insidious,” “deadly,” or whatever adjective is du jour, cancer type.

I get tired of having to explain. One of the many reasons that I get so annoyed by breast cancer “awareness” is that the focus on that idea has led people who are clueless about breast cancer to think they know what they’re talking about, leading them to question someone like me who might actually know more about the subject, HAVING HAD IT MYSELF. I know what the media portrays about breast cancer, but why do I always have to set the record straight? Yes, I can eat tofu. Yes, I get regular periods, and I could get pregnant, though that would be a huge mistake and potentially disastrous for my health. No, I don’t take any medications. There is nothing for me to take. The fact that I was stage one does not mean that I beat the disease. The fact that I was stage one definitely does not mean I shouldn’t have had to do chemo. No, those risk factors don’t apply to me. Yes I will scream from the rooftops that I believe birth control pills played a huge role.

I sometimes get livid when I read articles about breast cancer that are filled with statistics about risk factors, lifestyle fixes, and other things related to breast cancer. I do research for a living. So I always think, is this for all types of breast cancer? All stages? Pre-menopausal or post? Before age 40 or after? The most basic studies should control for these things, because it is well known that the answers to these questions point the reader to different types of breast cancer that behave in fundamentally different ways. But so many studies just talk about “breast cancer.”

Sorry—that doesn’t help me.

The thing that precipitated this blog is an article that I read that provides some rare and promising news about future treatment of early stage, triple negative breast cancers. It's too late for me to try this, so I am left to wonder if I would have volunteered to take these drugs if they had been offered to me, not knowing if they would help, and knowing they would probably have averse consequences on my strange metabolism that hates drugs. Even though it won't help me, I do take comfort in knowing that they are making strides in helping future generations of TNBC survivors. I do NOT find comfort in the article reminding me that I had “an especially deadly form of the disease.”

Thanks, jackass.

In a way, I’m glad that I went to a large, sterile, relatively anonymous research hospital for my treatment. There were times when it frustrated me, but there were also advantages to the fact that the doctors I was assigned to had seen just about everything that breast cancer could throw at them. Lactating women with cancer? Extremely rare, but they’d seen it. Multiple tumors of different grades? Done that before, no problem. Triple negative and BRCA negative at age 34? Hmm, interesting, but doable. No one ever focused much on “triple negative” with me. Yes, it meant I could in no way avoid chemo and it dictated the type of chemo I would have to do, but they focused on my stage and response to treatment. I realize now that my being triple negative was at the top of my doctors’ minds, but they chose not to dwell on it. My monotone, unsmiling oncologist would acknowledge it sometimes, saying things like “well, it’s true that there are no maintenance medications for you. But maybe that’s a good thing in your case—you won’t have to take more medicine that you might react badly to in the future.”

Um, thanks?

Here’s what I still find frustrating. WHY is triple negative breast cancer more aggressive and deadly? Or more precisely, HOW is it thus? What I mean to ask is this: is it aggressive in the sense that even my stage one cancer is more likely to come back, regardless of the fact that it didn’t spread to my lymph nodes? Is it aggressive in the sense that it finds local recurrence pass√© and would always choose to metastasize to a distant area of the body, bypassing the lymph system entirely, and going straight to the soft tissues? Or is it aggressive in the sense that it grows quickly? Or in the sense that it is often found at later stages (because younger women who are unlikely to receive diagnostic testing are more likely to have it)? I think, unfortunately, that the answer is all of the above. And that sucks, because being stage one really should count for something. But I can tell you that mine was fast growing. I’m sorry, but that tumor became palpable OUT OF NOWHERE. Oh wait I’m sorry, I meant to say TUMORS. I was in a rare population of women who manipulate their breasts all day—nursing women. I would grab my boobs, contort them, massage them, you name it, to help my crazy, kicky baby boy eat. Maybe he was crazy and kicky because I had milk supply problems due to cancer. Or, maybe he’s just Augie. But the point is, I nursed five to ten times a day for almost a year and never felt it. And then BAM. Hello, cancer. I am not alone in experiencing this—other triple negative survivors have told me that they could almost watch their tumors grow.

So thank God I just stoically accepted my fate and told them to do the core needle biopsy on the same day as my first breast ultrasound, which turned into something else entirely. Because if I had waited, the tumors could have gotten bigger very fast. As it was, it’s amazing that I was stage one with three tumors—though all together they were more than 3cm in diameter, taken separately they were 1.6, 1.1, and 0.6 cm, and breast cancer staging is a like a consecutive prison sentence rather than a cumulative one, if that makes sense. So I got to be stage one. But does that even mean anything with TNBC? Who knows.

Regardless of my crazy bionic tumors, maybe the REAL answer about the aggressive nature of triple negative is all of the above, because some TNBC cancers are aggressive for all of those reasons, others for only just one, or none, of those reasons.

Because triple negative breast cancer is a fallacy.

I don’t believe triple negative breast cancer exists.

Yeah, I said it. Triple negative breast cancer is not a cancer type. It is an admission of ignorance on the part of the medical community. I had a cancer of unknown origin, and my cancer might be different than any other given triple negative breast cancer patient’s cancer.

After all, I am a redhead, not a non-blonde. My hair has a name, and it has extra copper in it, and it is caused by a genetic mutation.

So it is with triple negative breast cancer, in a way. But no one knows the real name yet, or what is in it, or what causes it.

Just think—not twenty years ago, breast cancers were all treated the same. Now, we know that there are at least eight types of breast cancer:

Estrogen + (the overwhelmingly most common).

Progesterone +

Estrogen+ and Progesterone +

HER2+ (possibly more aggressive than TNBC but has known effective treatment)

HER2+ and Estrogen +

HER2+ and Progesterone +

Her2+, Estrogen +, and Progesterone + (also known as “triple positive”)

Estrogen-, Progesterone-, and HER2- (also known as triple negative)

Add on to that BRCA status and you have more iterations and types of treatment.

Triple negative is just another term for “your guess is as good as mine.”

I have theories. One is that I think they should check breast cancers for testosterone receptivity. I wonder if some of us who are triple negative have a slightly elevated level of testosterone that somehow alters our breast cells. Maybe that accounts for my high sex drive, my temper, my inability to sit still, my naturally muscular arms. I have another theory that there is a subset of TNBC that involves young women who were on the pill for many years starting at a young age who subsequently got pregnant very soon after, then spent years either pregnant or nursing. (Here's an interesting tidbit in wikipedia: in one TNBC study, women under 40 who took the pill for more than a year were more than 4 times as likely as women who hadn't taken the pill to get TNBC). You think I’m crazy? That my science is so off the wall that it doesn’t even qualify as “junk?” Well, again, my guess is as good as any at this point. The bottom line is that there are likely several types of cancer underlying TNBC status today, and some are probably more aggressive than others.

Surely, over the years, there have been many women with triple negative breast cancer who survived many years. But at the time of diagnosis they weren’t aware that they were facing something more insidious, aggressive, deadly, yadda yadda yadda. Maybe their spirits weren’t crushed the way some TNBC survivors’ have been. Other breast cancer survivors say unknowingly damaging things to me when they learn that I had TNBC, or that I had multiple tumors: “Oh honey, I’m sorry.” “Wow, that is a rough one, I’m glad I didn’t have that” and so on. I heard one story of a woman who was told by her doctor “just write your will, because your cancer type is difficult to survive.” The woman who related that story to me about her friend was also a TNBC survivor, and she said this: “That just devastated her. But, it’s seven years later. And she’s still here.”

It's possible to look at being triple negative in a positive light: there are hormones, including those such as estrogen that are very prevalent in women's bodies, that do not blow up my cancer. Moreover, I don't have to go into menopause. But, you know, I'm bad at the whole positive spin on cancer thing. And, it's hard to find role models. After all, statistically speaking, there is no such thing as a 20 year TNBC survivor. Because 20 years ago, TNBC didn’t exist. It’s like purgatory. That was a real place, until the church decided “JUST KIDDING!”

So it’s not heaven, nor hell, but somewhere in between. Some of us are still here, still in limbo, wondering if being early stage means a damn thing with this TNBC we were unlucky enough to have. We are getting a little louder, forming crackpot theories, volunteering for clinical trials, warning others about birth control, trying to stay skinny, swearing too much, not dead yet!