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Genetic Testing

Yesterday I met with the rad oncologist (radiation AND Gwen Stefani) to tell him I wanted genetic testing before radiation. He was not super psyched and told me not to put off radiation too long. I walked out mad and sad, I admit. It's my body, dammit.

Today I went to the med oncologist, who told me I'm triple negative from a hormone perspective, which means they can't prevent more cancer with drugs. Apparently (shocker) this is also fairly rare.

My doc decided to break from protocol and do the testing herself. I really appreciate her and KU Med for letting me find out if I have BRCA before my radiation is scheduled to start. That is a huge weight off to have the information I need to make good decisions about treatment.

Also: adulting sucks.

I go on vacation next Wednesday. When I get back I should know if it's more surgery or if it's radiation, and either decision should bring the first real peace since this nightmare started in April.

ONWARD.

Aftermath

The internal stitches are starting to dissolve. Day by day the skin lies flatter. My surgeon cleared me to get in bodies of water with a bandage. He said the lake of the Ozarks is particularly dirty. I laughed.

I've done some research, realized it's harder to operate on radiated skin. Decided to insist on genetic testing before radiation. If I have the rare BRCA, I'll have a bilateral mastectomy. Ironically, if I did that there would be nothing to radiate. So I go with that, because with that decision I guarantee only one sucky thing has to happen, not two. Mastectomy or radiation. Not both.

This week I get my radiation tattoo and find out about drugs and genetic testing. My husband is in Indianapolis. My daughter is volunteering at a retirement home. I'm 90 days into my new job. I go on vacation next week.

I need this vacation. 2016 sucked.

I am watching THE HANDMAID'S TALE. To some extent, I remembered that in my moments of humiliation and pain in my surgery, that mine is not such a bad story to tell. Everyone in my story acted in my best interest.

I don't forget that.

My story is pretty trivial, except to me. As are all of our stories.

ONWARD.

Margins

Yesterday I cried several times at work. Big, splashy tears. It felt so strange to have my co-workers think my IV bruise was a spider bite, like life is that normal. I ended up telling a few more people because I thought I might scream.

I made it through the day, and last night I stood in the shower for 45 minutes with a bar of soap gently trying to work off the dressing stuck on with dried blood like superglue. Finally it came off and I was do relieved the incision didn't start bleeding I cried again. This is a wet business, DCIS.

I put a ton of Neosporin and five butterfly bandages on the gnarly incision (frankly, it makes me kind of queasy to think what is gone) and went to sleep with my arm in a pillow. I dreamt someone wanted to sell me a grand house with an inside swimming pool and I said to Greg we couldn't afford this place if one window broke because the ceilings are fifty feet high and woke at five in the morning wondering what that meant.

My girl and I have clashed a bit, which has always been my biggest fear with maternal cancer. I worry I'm rising too much to her teenage criticisms, which are unfair in the way of teenage and not personal, though it feels that way. I wish I could say I'm such a big person I don't mind if challenges arise when I'm less than a week out from losing an ice cream scoop of breast tissue, but you know what? I'm not. I still feel pretty damn sorry for myself, I admit it.

My doc called this morning to say there was no DCIS left in my pathology, which is way good news for my health but also there is a touch of "so I went through all that for nothing?" And even though I know it's not for nothing, we needed to know the margins were clear, I look in the mirror at what I am now and remember what I was a week ago when unbeknownst to all of us, the cancer was taken by the biopsy.

Bygones.

But props to the biopsy guy, right? Here's to you, dude, because those were small samples. WTF? Get down with your bad self.

There seem to be many steps left. My girl is mad at me. The road feels long and rather lonely. My incision hurts. My pride hurts. My mothering instinct hurts.

I guess I'm not the poster child for doing breast cancer parenting right.

Fuck it.

ONWARD.

Lumpectomy

[Editor's Note: This is gross. Feel free to skip. However, one in eight women will develop breast cancer in their lifetime. I personally know four, including me, under age 50. Get your mammos, ladies.]

After the biopsy, they left a metal clip behind to sort of guide my surgeon in. Most people have an actual tumor. I don't have that. I have these invisible calcifications that only show up on a mammogram. They took some of them out in my biopsy, but what is left is scattered.

Usually, women have one wire inserted in their breast prior to surgery, X marks the spot.

They put the little calf pumper sleeves on me (if you haven't had surgery, they inflate one side at a time during surgery to prevent blood clots in the legs). Good stuff, but the tubes drag. Then they hooked me up to an IV. Also good stuff.

We went back to radiology to get my wire inserted. I was in a chair, which they pumped up like at the salon. I offered to stand, but they said it would be awhile and also, some people pass out.

They put me in a mammogram machine with a hole in the plate and shot in the burny numbing stuff, just like the biopsy. The breast care woman whose job is to be a human was there at my side as the nurse and radiologist fed in wire #1. It was very similar to how you would feed a wire through a wall, with all the jamming normally involved. A few times during the entire procedure they hit spots not numb, and I would yelp and more numbing burny stuff would be applied.

More pictures. A second wire. More jamming and the pressure that indicates that right now, you might be a gristly and somewhat difficult piece of meat.

By now, this is all happening a foot below my head, but I don't want to see wires jammed in my body, numb or not, so I close my eyes and cry, and the breast lady removes my glasses and wipes away my tears and asks me if it hurts and I say, no, but this is so weird. And I am, you know, a human. Humans have feelings.

Then we think it is done and they tape a Dixie cup over the wires that protrude three inches out and they take another picture and it's as though there are far right Republican calcifications who have fled Nippleopolis to settle on my chest wall far from the riffraff. Even in my body I have to deal with boundary wars. The radiologist declares he needs another wire to triangulate what needs to come out. So now we need to shove my boob and its two wires back into the mammography machine and through the hole for the third wire.

The surgeon comes to see what is taking so long and I curse the Republican calcifications.

Finally, me, my IV pole, my calf tubes, my Dixie cup and the beginnings of a barbed wire fence are rolled back to surgery.

As we roll into the OR, one of the students is on her phone and I have a brief and completely irrational fear of ending up on Snapchat.

I spent yesterday in a hydrocortizone haze and today am down to Advil. The pain is not bad considering the bastards on my chest wall and what looks to be a two-inch incision.

I won't go into further detail, but I don't look the same. I had a good cry. My chest has never been a point of pride, but it was, you know, symmetrical.

For now, I focus on healing. I get my initial radiation scan before vacation and start radiation in late June. I couldn't get in for genetic testing and counseling until August, which sucks, because BRCA could change everything. I haven't fought for something different because I need to not control this one. I need to show up and let the professionals handle it. They didn't take lymph nodes or do a MRI because my surgeon says it's aggressive overkill with DCIS and I chose to believe him. I'm not a doctor and I need to not feel any level of responsibility in this. If I die because I trusted a board-certified medical professional, I won't blame myself. Or him, really. I don't think we should blame doctors short of gross negligence. Our bodies are loose cannons, and we're all terminal. It's just a case of what you'll die of, and when, not if. Never if.

I go back to work on Monday so I'm not doing shit this weekend. I slept most of today. Texted with a friend who has a friend who just had a double mastectomy. That is worse. Yet I'm sulking today, because no one wins in the Suffering Olympics and I really didn't see this one coming. At all. They might be small, but they used to match. Fuck it.

Onward.

Measurements

I used to have a ceramic cupcake. My sister and I got in the habit of putting our worries in the cupcake and, you know, letting the cupcake deal with it. I gave my cupcake to my girl when she needed it, so Sister Little just sent me this new one.

I put cancer in it.

Tomorrow I get measured so I suppose if I swell or shrink dramatically after surgery they can tell.

Today I went to a big work meeting and didn't tell one person I'm out on Friday to have just a touch of breast cancer removed.

Some of them know. They've been cool. If anything, it's a high level of privacy compared to the culture I used to be in so I float between various ways to interpret the people around me.

So you act like it's nothing at work, so they'll take you seriously (which I very much want), and you minimize it at home so as not to scare your daughter. When do you get to acknowledge it's real? Like OMG the pink ribbon thing happened? I'm going to act like this is totally cool, yo, even though lasers are going to attempt to kill certain cells in my body every day for weeks and I'm going to have to go to work and take care of my kid and deal with my husband's travel like it's business as usual.

The most unfair thing isn't the cancer. It's having to act like I don't care I have cancer.

Measurements

Some Thoughts on Cancer

It seems like more than one day ago I found out I've been diagnosed with Stage 0 DCIS.

Yesterday, I was all, I can totally handle this. This? This is like nothing. I've always assumed I would get cancer because my mom did and this is the totally easiest cancer. This is going to be fine.

I told people my biggest relief in all this was that I didn't find out I had it when I was unemployed, because my head would've exploded. I am being totally sincere in that. God made the insurance refuse to cover my mammogram until after March 15. I started my job on February 13. That is so not a coincidence.

If I had found this out when I was unemployed, I'm not sure I would be in the same place mentally I am in today. Thank God for small favors, because these calcifications were totally in me a few months ago. I know they were. I just did not, at that time, know they were there.

Tonight I went to see Sheryl Sandberg talk about her new book, OPTION B. It was a good talk and she's an amazing person, but at one point she said, "If you want to shut down a room, just say yesterday you got diagnosed with cancer."

Yesterday I did get diagnosed with cancer.

Of course I started bawling there in Unity Temple.

And of course people came up during the question and answer period with stories so much more horrific than mine that I felt bad, but we've all been down the road of the Suffering Olympics and know they don't give out medals at the end. My suffering is mine and yours is yours and the poor pregnant woman whose five-year-old had died of cancer LAST MONTH WHILE SHE WAS PREGNANT CAN YOU EVEN IMAGINE has hers. All we can do is lift each other up.

The thing I didn't realize that I'm sure other people do is when you tell a bunch of people who care about you something scary and dangerous has happened, the response can be a little overwhelming. I have always adored people paying attention to me for good things, but I'm finding it extremely uncomfortable to have them pay attention to me for bad things. That is super interesting to me. I wonder why that is? It probably means I'm really arrogant and don't want anyone to think I'm weak or something for having like ductal carcinoma in situ with necronic asswipey cells that are determined to dance the cancer tango if I don't annhilate them like the little rat bastards they are. And that's true. I don't like people thinking I'm weak, though I am so totally weak. Especially not after they just had to be nice to me in 2016 because I broke my leg and wrecked my car and lost my job. It's like I can't even navigate basic life skills or something.

Damn, this is embarrassing.

But in some ways, the cancer thing is slightly less embarrassing than the leg, or the car or the job, because this one is totally not on me. I couldn't have headed my asswipey cells off at the pass any more than I did by getting yearly mammograms. For once, it wasn't my lack of foresight or tendancy to stay put in a company I liked or lacking brake pads or eye-hand coordination that got me here.

I swear I did not bring this on myself.

That's actually one of the things Sheryl Sandberg talked about that I really liked, that you really shouldn't take trauma personally. As much as I'd like to why, me this whole thing (and it is so beyond tempting, because seriously, 2016, how did you follow me into 2017 just when things were looking so up?), cancer isn't personal. Why not me? Actually, I'm a good person for this to happen to because I have an amazing support network and I have insurance and paid time off. There are millions of people who don't have access to treatment or insurance or even running water. Why me? Why not me?

Sheryl said journaling really helped her, and I've blogged through so many hard things and great things in my life, I'm going to blog through this even though about twelve people still read Surrender, Dorothy. I'm going to do it for me, just as I started it for my daughter, WHO IS THE SAME AGE THAT I WAS WHEN MY MOM HAD CANCER AND HOLY SHIT THIS IS EXACTLY WHAT I HAVE FEARED WOULD HAPPEN THIS WHOLE TIME SO MUCH I EVEN WROTE A BOOK ABOUT IT WHAT THE FUCK?

Sorry - sometimes the voice in my head is super annoying. That's the voice that wants to play the victim and say I told you so, life, I knew this would happen, I was born doomed, but that is not true and even if it were I'm not that Rita anymore who always finds the worst in everything and then makes out with the worst because the worst is so damn sexy.

This is the new 2017 Rita, as Steph said, who is made up of the eating disorder 1992 Rita and the anxiety-disorder-crazed early 2000s Rita and all the other Ritas who came before those two. 2017 Rita is RESILIENT, DAMMIT and is thus going to blog this stream-of-consciousness bullshit and have a Coke and a smile and shut the fuck up because ruminating WILL NOT HELP.

Onward.

 

Stereotactic Biopsy

TRIGGER WARNING: GROSS STUFF

Today I had one of the more bizarre experiences of my life: the stereotactic biopsy.

It was ordered after a routine mammogram revealed microscopic calcifications that were not there last year. Women over 40 should have a mammogram every year for this reason, even though it is about as fun as the first level of hell to have your girls squished between two glass plates, especially when your girls are as small and difficult to squish as mine.

Do it anyway, ladies.

So today I took the day off work and went in. I'm going to describe it because hell, someone might benefit.

You lay down on this table. They told me the table can only be lifted if you weigh less than 300 pounds, and boy, would you be surprised at how many people these days are more than 300 pounds, and then since the table can't be lifted, the doctors have to work on their knees. I'm going to assume a doctor doing a biopsy on his or her knees is a cranky doctor, and you want anyone shooting needles into your lady bits to be in a GOOD MOOD, so note to everyone, make it to 299 before the biopsy.

The situation is in a stereotactic biopsy they raise the table and drop the offending area through it and smash it between two glass plates and pump it full of a numbing device that also contains some sort of ephedrine. As I lay there in a really uncomfortable position, the breast care consultant or whatever her title was put a warming blanket over me, put her arm on my back in a most comforting way and led me through a series of questions clearly designed to get me to not concentrate on the fact the doctor was extracting six tissue samples from my breast by the means of a hollow needle.

This woman was very good at her job.

I was pretty much okay until I saw the tray of the tissue samples, which they ran through the X-ray. I saw the calcifications (if that's what they are) that had been removed. And I realized I had a hole roughly the size of a pinhead that went down to the chest wall of my breast.

They congratulated themselves for getting most of the calcifications on the tissue samples and gave me some band-aids. I was feeling really weird at this point, which they attributed to the pain medication and my fairly young age (I don't get that except maybe psychosomatic feelings of immortality). We went into the mammogram room again, where the mammogram machine was LED-equipped and gave off a trippy range of LED colors while I was being smashed again and worried the bandage would not seal the hole in me.

I asked to see the metal clip they left behind to identify the area. It is really small, but it is another piece of metal in me, just like the plate on my leg, adding to my cyborg-ness.

I had a panic attack after the last mammogram. The nice lady said that wasn't so uncommon, to freak out at the end.

Then I went home. I forgot there was a hole in me and pulled in the cat cage and ended up needing a butterfly bandage to rectify the situation.

And tomorrow I go to work. Like everything is normal, except maybe with an Ace bandage wrapped around my chest.

I hope I don't bleed there. God.

I hope this is the end of it, but I'll take whatever comes next. What happened today was the most bizarre thing outside childbirth I've ever experienced. At least everyone around me at the time was willing to say, yeah, this is cray, we hear you. Because sometimes that's all you need, like, OMG, this is happening now, right? Right. Oh, well.

Onward.

 

Don't Think About White Bears

I'm reading this book about willpower. Dan Wegner had read that a Russian writer bet his younger brother that he couldn't go five minutes without thinking about a white bear. The brother lost the bet.

Trying not to think about something is exhausting. Riding the ridiculous adrenaline roller coaster of anxiety disorder is exhausting. Having a good reason makes the temptation to ruminate harder to resist.

What I'm trying to use, this time, are positive role models.

At my last mammogram, the doctor told me I have a cluster of something that needs to be biopsied. The consult is on Monday. I have no idea how long I'll have to wait to actually do the biopsy and get the results.

I'm trying not to think about white bears, or as they're otherwise known, breast cancer. I think about them approximately five times an hour when I'm awake and once a dream when I'm asleep.

I've been out of the financial/job woods fewer than 90 days.

Back to the book: I have willpower fatigue. It is not in my nature to be upbeat and resilient. These are learned behaviors I am working on. Whenever you watch the show about the natural disaster, there's always the zen guy and the freaking out guy, and they're in the exact same situation.

I'm trying to learn to be the zen guy, because if I do have cancer, freaking out will be totally counter-productive.

I look to my two dear friends and one SIL who have successfully navigated this path to prop myself up against the fear. If it is, it is. I'll work my hardest to be the zen guy.

I'm grateful this didn't happen when I was unemployed, because it took all my energy to just buoy myself from morning to night then. A medicine I needed got denied at that time so I went without, and my Vitamin D fell to dangerous levels. Even now, I'm low, and the struggle is real. The thought of working with a husband traveling and adding on any other health energy drains is sort of terrifying, I'll admit.

It's exhausting to listen to myself talk, really.

So I thank you, role models, strong women who batted away breast cancer in a matter of months due to early detection, who make me think even if it's bad news I can knock it out with minimal collateral damage. You made it look good, ladies. You gave me hope.

My prayer is not that I don't have breast cancer, but that I possess the resilience to deal with whatever comes my way.

I'm trying to become the zen guy. But yes, I would also like a rest break, do you hear me, God? It's me, Rita.

Don't think about white bears, He says.

The Softness of a Blanket

When I was in my early twenties, my paternal grandparents died. It was the first time I suffered a great loss far away from my nuclear family. I lived in Chicago and received the news over the phone with no shoulder nearby to lean on.

I remember quite clearly sitting on my bed the night I learned about my grandfather, wrapped in a blanket they'd given me. It was a soft blanket. As I stroked it, I remember thinking I was off the hook from my usual worries, because not even I could hold myself to my schedule when this thing had just happened.

Back then only the death of a family member could make me give myself a break, let me live in the moment and admire the softness of a blanket.

Since turning forty two years ago, I've finally begun to let myself feel the blanket without first extracting a pound of flesh. This period since my lay-off (8/23/2016, FTW!) has introduced that thing I've always assumed would be the beginning of the end: losing my job. I've been steadily employed except for 12 weeks of maternity leave since 1996. Normally my mind would go straight from lay-off to bankruptcy to eviction. But somehow, because of the softness of a blanket, there have been three freelance projects and ten interviews and an upcoming reading and conference panel appearance. I haven't nailed my next step yet, but I haven't felt like a failure. And it's because of the blanket.

Mindfulness is a buzzword, for sure, but it is shockingly effective. My only regret now is that I suffered through so many years thinking if I stopped listening to my repetitive thoughts I'd somehow forget to breathe. I feel bad for the me of then. That time totally sucked.

And I thank God I didn't lose my job then. And to some extent that my husband lost his three years ago, giving me proof we could pull through a loss of half our income without losing our house. A dear friend told me then all I'd remember in the end was how we treated each other, and I really tried to set aside my worries and be supportive then, and I'm getting it back in spades now.

I know this period of changing seasons will pass. I'll find a new job. I'll end the era of working from home, an era that perfectly bookended my daughter's elementary school years (I'm grateful for that). I'll probably wish I'd worried and freelanced less during this time, but to some extent, that's just who I am.

But here I sit, wrapped in the blanket my sister bought me to replace the lost one from my grandparents.

And just now, I was thinking how soft it is.