What’s The Matter Here?

I drove around the corner, pulled up short and dialed 911.

“Trenton Police. What’s your emergency?”

“There’s a woman abusing her kid. Magowan Alley off Clinton Avenue.”

“Tell me what you saw.”

“She was in the middle of the street as I was coming slowly down it and she grabbed his arm and flung him toward the sidewalk in a really mean way.”

“You say she moved her child out of harm’s way?”

“Well, … technically yes, but she did it several times and really meanly and he was crying. As I drove by she was screaming at him, between glancing back and forth at her phone. He was really crying and looked afraid she was going to hit him. I was afraid for him and thought I should do something.  She was being really mean.”

“Someone being mean to their kid? Good thing you called. We’ll send a squad car.”

Okay that didn’t happen.

When I saw the woman look up from her phone and realize that I was creeping toward her at about 2 mph I thought she’d just mosey toward the side like the other people walking down the narrow street. I wasn’t ready for the violence with which she grabbed the arm of the 3-year-old beside her and flung him toward the sidewalk. She didn’t move herself, but instead consulted her phone. As I got within 50 feet or so she stepped toward the crying child and again grabbed his arm and flung him, this time onto the sidewalk. She joined him there and got all up in his face, yelling at him as tears streamed down. It was as if she were kicking a kitten.

I pulled over and got out of the car.

“Hi, I’m Linda. Can we chat for a minute? What’s your name?”

“What? What’d you want?”

“Three-year olds sure can try your patience, can’t they?” To the child I said, “Hey, buddy. What’s your name?”  He stared wide-eyed, his thin body shuttering with each inhale.

I went on. “You know, I’ve been wanting to get involved in helping moms with parenting skills and I think I could really help teach you some strategies for managing a challenging little boy like yours. My kids are older now so I have a lot of experience. Do you want to take me up on that? We could meet once a week at a park or something….”

“Fuck you. Mind your own business.”

Okay that didn’t happen either.

I pulled over and got out of the car. I got my phone out and recorded that woman flinging her son by the arm, screaming at him as he cowered. Black Kids’ Lives Matter. All kids’ lives matter. How is this child going to grow into a functioning adult with a mother who treats him like that? I looked behind me and 4 other people also had their cell phones out, recording. Within three hours the videos went viral. Case workers from the Division of Children and Families recognized the mother; the video provided the evidence they needed to finally move that child to a safe and nurturing home.

Nope. Not that either.

The 20 or so people walking down the narrow street parted as I approached. They all saw what I saw. They all did what I did: nothing. If she’d been kicking a kitten someone, including me, would have intervened. I rode by, shaken, and thought of all those alternate scenarios on the way home. All the others likely felt equally bad that they didn’t do something, while of course wondering what they could have or should have done.

Someone probably treated her like that when she was a kid. She is probably under a lot of stress, with 2 young children, likely living in poverty. I could conjure excuses for that woman’s behavior but could think of nothing to excuse me from mine. There was no excuse for doing nothing. But what was the something that I should have done? Whatever it was, I didn’t do it. There is no penance I can serve after the fact that will comfort that child. There is no action I can take now that will tame that mother’s rage.

Answer me and take your time

What could be the awful crime

He could do at so young an age?

If I’m the only witness to your madness

Offer me some words to balance

Out what I see and what I hear

All these cold and rude

Things that you do

I suppose you do

Because he belongs to you

And instead of love

And the feel of warmth

You’ve given him these cuts

And sores that don’t heal with time or his age

And I want to say,

“What’s the matter here?”

But I don’t dare say

“What’s the matter here?”

But I don’t dare say

What’s the matter here? By Natalie Merchant

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As summer 2015 unfolds I can’t help but think about last summer, 2014.

As summer 2015 unfolds I can’t help but think about last summer, 2014. “That Summer” was the theme of a writing contest I entered last July, right when I was in the thick of things. Pastemagazine.com’s submission rules invited me to, “Think back on a summer that was pivotal in your life, one that remains memorable for being transformative in some way, big or small.” Memorable is certainly one way to describe it. My challenge was to somehow summarize my breast cancer summer in less than 600 words. My entry wasn’t selected (fire flies and first kisses it wasn’t), but it did elicit sympathetic best wishes from the editor. Reading this boiled down summary now that it’s nearly a year behind me is surreal. Even though it re-hashes some of the things I’ve written about in my blog posts I thought I’d post it anyway.

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That Summer

On the first day of summer, 2014, I had one breast and I was bald, weak, in pain, and irritable. My husband pretended that he didn’t mind cooking dinner, but his wine consumption doubled. My children were useless and mean, which I suppose is how all children seem when scrutinized from the couch, 24/7, by an irritable mother. My dog was sick of me, sleep deprived and barking at the slightest provocation. Weeds had taken over the flowerbed and moss was growing on the patio. Who knew what the heck was happening at work in my absence. Yes, the story of this summer sucks, at least at the beginning.

me & ralphie

My February mastectomy preceded sixteen weeks of chemotherapy, complete with side effects: nausea, fatigue, constipation, hair loss, bone pain, neuropathy. On the good days I sat on the patio and let the sun bake my legs. Best tan ever for a freckled red head. I started a blog. I read a lot. I went to lunch with friends then, exhausted, took a nap. On the bad days I took more pain meds than during the rest of my life combined, soaked in hot baths, and binge-watched back episodes of Breaking Bad. Every two weeks a nurse pumped me full of paradoxical, life-saving poison. And on the off weeks a nurse pumped saline solution into a tissue expander implanted just north of where my new breast will be. The pain that followed was not unlike a hot poker in the armpit.

But by mid-July, with chemotherapy behind me, water no longer tasted like oil and soft peach fuss covered my head. I found the energy to clean up the cat vomit under the bed. Although I had to nap afterward, I could swim 10 laps and walk for an hour.

Through the mastectomy and the chemo, friends said things like, “You’re strong. You’ll make it through.” And they told my husband, “Linda’s a strong woman,” which he recounted to me in a craggy voice, evocative of a Grandpa talking about Grandma who’s chopping wood over by the log cabin.

I suppose a breast cancer diagnosis prompts some people to freak out, some to break down. My natural tendency is to just deal with things, and this is just one more thing with which I deal. Am I strong? I guess I am. Do I have a choice?

The current state of affairs in my chest area is that my remaining breast is where a 53 year-old breast should be, vertically speaking, and my temporary, mid-reconstruction breast is where one would expect an 18 year-old breast to be. I can almost rest my chin on it. Before leaving for his summer vacation my plastic surgeon will put my new breast in the same general vicinity as the old one.

On August 21st I’ll start six weeks of daily radiation therapy. I’ve heard radiation is just like a bad sunburn if the remedy for a bad sunburn is to go out and lay in the sun again the next day, and the next day, and the next day. When summer ends I’ll have 2 weeks of radiation treatments left. My skin will be so red and angry that wearing clothes will be a challenge, like my fair-skinned, ten-year-old self trying to put on pajamas after a long summer day at the beach.

Yes, it’s that summer.

So how does this summer story not suck all the way through, as promised? Spoiler alert: at the end of the summer I will be alive and cancer free. I’ll have beaten stage-three breast cancer.

me in sept

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These are the ramblings of a middle-aged parent

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These are the ramblings of a middle-aged parent, pondering what keeps me up at night: mostly concern about my children’s safety, welfare and happiness. As parents we try to protect their kids. Its what we do. When Julia was 10 I discouraged her from doing a self-defense karate class that her friends were doing because I didn’t want her to think the world was such a dangerous place that she needed to defend herself. That seems really dumb in hindsight. But I was trying to protect my innocent, creative daughter from the wide world, and to build positive expectations. Luckily she developed street-smarts during her teenage-years by watching enough TV shows where the women get abducted to know never, ever get in the car because it always ends badly. By the time Cameron was 10, five and a half years later, I was pushing confidence-building karate, mostly because Cameron was so naïve and sensitive that I figured at some point she was going to need to defend herself, if only from her own self-doubt. Isn’t it funny how your perspective changes?

Yet the child who I tried to protect from fear turned out full of it. Set aside the odd fact that Julia will confidently stride the streets of Brooklyn at all hours. Julia is afraid of ghosts and home intruders. We often pull into the driveway to see our house ablaze; she’s turned on every light and locked all the doors. Locked doors might sound reasonable to many but here it is totally unnecessary. Home alone when a mild earthquake occurred, she ran from the house, jumped in the car and sped to her grandparents, convinced that ghosts were shaking the pictures on the walls.

Cameron on the other hand is fearless, possibly to an irrational degree. Wondering why she was so late getting home from her job at the mall the other night I used my Find My Phone app to locate her. Although she accuses me of using it to stalk her, I mostly use it to see if she is on the move, driving and unable to text me back. What I found was that, on a 10-degree night at 11 p.m., she was in the woods, lakeside, at the end of a mile-long dirt road in the Assunpink Wildlife Management Area near our house.

I texted: “Where are you?” which was the least antagonistic thing I could think of if she was in fact there of her own volition rather than as a result of abduction. Her prompt response was: “You’re annoying. I was taking a picture.” She was taking photos of the frozen lake. Alone. In the woods. On a freezing dark night. Seriously? Did encountering a psychopath never occur to her? How about a group of drunken teenaged boys? What about stumbling upon someone who was up to no good – dumping a body, raping someone? Of course all these things immediately occurred to me. Even after I dismissed them as unlikely, I came up with other fear-inspiring possibilities: bears, coyotes, thin ice….

She was home within 10 minutes so I took a deep breath and let it go. But she did the same at a different local but secluded lake on the following night, so when she got home I had to share with her all that might go wrong for a 19 year-old woman on a solitary jaunt in the freezing dark woods at night. Her response: “Da! If anyone else was there I wouldn’t get out of the car!” Here is where I didn’t go: What if the car got stuck in the snow? What if someone was hanging out in the woods waiting for you to show up? With every example my brain constructed, my better judgment helped me bite my tongue. I feebly mentioned bears but again she laughed and said sarcastically, “Yeah, they’re coming to drink from the frozen solid lake. Hello? Hibernation!” I was defeated.

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Over the following few days all this marinated in my brain and here is my conclusion: the chance that anything would happen to Cameron during one of these photographic forays is close to zero. There are photographers in war zones, but Assunpink Wildlife Management Area is not one of them. So even if my brain conjures new scary scenarios I won’t share them with her. She is fearless in a relatively safe situation, and that’s a good thing, especially considering her history of crippling anxiety.

But here is what I keep coming back to: Why is she not afraid? It’s not a lack of imagination or exposure (she watches Walking Dead). The woods behind our house abut Assunpink a few miles from where she was. Sometimes we hear blood-curdling shrieks from in there (a rabbit being killed by something big, we speculate) or a cacophony of barks and howls (a pack coyotes, we know). These sounds are literally hair-raising, in a primal, primitive brain sort of way. Have you ever imagined the pitch-dark woods at night and thought about how you would feel there? I would be petrified. Julia would be petrified. Maybe there is a gene that I passed to one daughter but not the other. I asked Fletcher whether going into the woods alone on a dark, cold night in pursuit of a cool photo was something he would ever do and his response was, yes. If he wanted it badly enough he would rationalize it to himself, relying on the fact that no one has died in Assunpink lately. There you have it. Julia and I have the scared-y cat gene and Cameron and Fletcher have the logical rationalization gene. Mystery solved!

In spite of my scaredy-cat gene, I know rationalizing away fear is a learnable skill because I did it for all of 2014. Breast cancer jumped out, not in the dark woods but under the fluorescent lights of doctors’ offices. For all of 2014 it sat nearby shrieking and howling, until I recently kicked it to the curb. I logically rationalize that I’ve been treated at the best cancer center in the world to try to keep the fear of recurrence at bay.

Whether it hits in bed in the middle of the night, creeps up behind in a cold dark wood, or pulls out the rug in a doctor’s office, fear is what keeps us present, compels us to protect each other and ourselves. We circle the wagons, double check that everyone is safe.

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The next time I take the dog out at night I’ll dismiss the thought of zombies stumbling out of the woods. After 2014 I know there are definitely enough real things to fear. But I’ll still look both ways before I step out, and I’ll turn on the lights to illuminate the woods, because logically and rationally, I know that there’s a pretty good chance of encountering a bear in my back yard. Except maybe on the coldest of nights because, you know: hibernation.

*After I wrote this but before I posted it, Cameron stumbled in, mid-day, limping and in tears.  She’d been to the lake taking photos in broad daylight, tripped on a snow-covered stump, and fell on the knee she previously had surgery on.  Turns out I was worried about all the wrong things.  Go figure.

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“Good morning, gentlemen,” the waiter said to my husband and I.

“Good morning, gentlemen,” the waiter said to my husband and I. We’d stopped into a quaint little restaurant for second breakfast after my brain MRI this morning.

“Er, eh, …Ma’m, sorry, sorry….” He attempted to recover when he heard my voice.

“It’s ok. It happens.”

It wasn’t the only time I’d recently been mistaken for a man. About a month ago a gas station attendant said, “Can I help you, sir?” In fairness, I had no business driving to drop Julia off at the train station with so little hair in my (admittedly) manly pajamas. I was playing the part of a middle-aged balding man in a plaid flannel shirt. If I could have lowered my voice an octave I could have landed the role.

So much has happened since I last posted. Radiation is finished and by all accounts (radiation oncologist, plastic surgeon and occupational therapist) I am ahead of schedule for healing. My skin shows little if any evidence of the assault. The tissue and muscles below are coming along but are still pretty tight. There’s just that three-consecutive-day migraine bout that needs resolution, hence the brain MRI.

My brain seems to be functioning just fine so I’m not really worried. I’m back at work and finding that I didn’t forget everything I ever knew about site remediation, as I’d feared. I’d just stuffed it into storage at the back of my brain to make room for all the cancer related stuff I needed space for. I am finding I have poor recall, however, for projects that I was working on close to and just after my diagnosis. I guess those were jettisoned before they had time to settle into long-term memory. I’ve been anticipating chemo brain that might not have been evident while I was out, because I wasn’t really taxing my brain, but thankfully so far, so good.

Going back to work has been overwhelming in that so many people are stopping by to welcome me back and wish me well. I’m not really the center of attention type so I find it a bit stressful. My staff have been functioning without me for eight and a half months so I’m feeling sort of un-needed at this point, which is probably good because I’m still out a few days each week for occupational therapy and doctors appointments. They are allowing me the luxury of easing back in slowly. I continue to be grateful every day for their donations of benefit time, a cushion I can continue to rely on when I need to be out over the next few months.

Right before I went back to work we spent a weekend in Virginia with Doug, Laila and Maddie. John was at school and could not be coaxed to blow off classes to join us, which I guess is a good thing but we missed him. We had a great time. Serious hiking for Maddie and Julia (Cameron opted-out early on) who hiked Old Rag mountain in 5 hours, returning after dark (causing some parental consternation!); serious biking for Fletcher and Doug; Laila got a run in and otherwise relaxed and pseudo-hiked with me. A pseudo-hike is where you cross 2 babbling brooks on boulders then after only about a mile sit on a rock and eat a sandwich, then turn around, pick up Cameron and go to a vineyard. This was the first time in about 14 years that Bailey wasn’t with us. I missed marveling at how that old dog could run and I’m sure that’s what kept her around for so long. No photos of Ralphie but he had fun and was a good boy. Here are Laila and Beckham:

 LailaStream                    LailaBeckham

On the home front Cameron moved out and Julia is heart-broken. The way I wrote that they seem related but they are not. Julia is not heart-broken that Cameron moved out. She is heart-broken in the old-fashioned, amorous way and seems so sad. There is nothing I can do about it, no way I can fix it, and so I too am sad. It’s hard to job hunt when you’re feeling low but she’s going on a lot of interviews and getting pretty steady free lance work. Here’s why: http://www.juliagrayson.com As you can see she is amazingly talented. And beautiful. And funny.  Lately we have civil conversations without exasperated endings. Progress.

On the other hand Cameron has moved out and is happy. I think it will be a great experience for her and she is only about 3 miles away, so therefore I too am happy. She’s learning to live on her own, juggling 3 jobs (one of which is a promising career path in alternative education), with a solid safety net (i.e., us). I am trying hard to avoid uncivil conversations and exasperated endings with Cameron. Unschooling Cameron has taught me so much. I can’t help but think I’d be handling this all very differently, and not in a good way, if Cameron and her “issues” hadn’t forced me to be a better parent.

I keep thinking back to this day: Cameron was about 8 and snuggled with me in bed reading. Then thirteen-year-old Julia burst in and spewed a rambling complaint about some way in which I had wronged her, spoiled her plans, or in some way was an unfit mother who was ruining her life. I can’t even remember what she was so angry about. She stormed away. Cameron looked up at me and said, “Mommy I’ll never talk to you like that.” This prompted me to explain what hormones are and that I would love her even if she does talk to me like that because chances are, as unlikely as it seemed at that moment, she will also think, mostly because of hormones, that I am stupid and incompetent at some point. She didn’t seem to believe me then but about five years later found that I was right.

Having kids is a non-stop drama. I don’t mean that in a bad way. It’s just that there is always something major going on in their lives. When they were young we were directing the play but at this point we are in the audience, maybe called on to be an usher, but for the most part we just get to watch the show, not even allowed to adjust the stage lights or submit a review.

For now, my personal drama is to try to act like things are normal.  Like I can put what just happened behind me.  If I can make people believe I’m a middle-aged balding man in a plaid flannel shirt maybe I can make myself believe 2014 didn’t happen.

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If I lay still nothing hurts.

If I lay still nothing hurts. I take Ralphie’s 2×3 memory foam bed and position it in the sunlight that bathes the kitchen floor. As I curl up there I hear Ralphie walk up behind me and feel him staring at my back, waiting for me to invite him to join me. I ignore him so I don’t have to move.

maple

I’m happy to see the view from here: my favorite maple tree, brilliant orange against the wild blue sky. A few lingering Sweet William from my untended garden seem to peek in at me. Yikes, the window is really dirty. I try not to think about the fact that from the outside our house looks like its been abandoned due to both my untended garden and the unrepaired damage from Hurricane Sandy. For a few minutes I lay still with the sun warming me.

But soon I am roused by the intensity of the sun and the intensity to Ralphie’s stare. He stands, does not sit, and waits for me to move so he can take my spot. You can have it, I tell him, its too hot. As soon as I get up and retreat to the couch to write this, he moves in.

After my last chemo infusion, although I was technically done with chemo, I accepted that I still had two weeks of side effects to endure. But for some reason I didn’t really believe Dr. Schupak that the side effects of radiation would continue to get worse after my last radiation treatment. The side effects of radiation are cumulative whereas most of the side effects of chemo are cyclical (except neuropathy which was cumulative and is still with me). She warned of ever tightening, blistering, angry skin and fatigue “like someone pulled the plug.” She told me the skin reactions will be at their worst two weeks after my last treatment, then I will start to heal. That’s five days from now and I am counting, big time.

During the six weeks of radiation therapy I felt mostly good. I was able to take myself to radiation treatments, bike ten miles twice per week, walk the dog daily, do some yoga, take myself to occupational therapy. Even though my skin looked pretty bad it really didn’t hurt that much. Even the blisters in my armpits looked far worse than they felt. But over the past few days things seem to be getting worse. The effects feel like they are internal rather than just skin-deep. Last week Fletcher drove me to OT because I felt really tired. For the past two nights its been tough getting a good night’s sleep because I can’t get comfortable. Wearing clothes is a challenge. I feel like maybe I have enough energy for a bike ride today but wonder how my skin will tolerate the clothes I will need to wear for a 56 degree day.

I realized awhile back that I have a strong desire to please my doctors. I want to be the best patient ever. I want to go for my follow up on Friday and dazzle them with how well I’ve handled everything they’ve thrown at me. I want them to talk about me behind my back, about what a remarkably cure-able patient I am. This, I think irrationally, will assure my cure.

Lately I’ve been reading about the prevention of breast cancer recurrence. There is strong scientific evidence that one should exercise a lot (like an hour every day); not be fat (goal should be to weigh what you weighed when you were 18); eat an organic, mostly vegetarian diet; avoid sugar and stress (and I don’t mean the English Beat’s song cuz’ that’s awesome); avoid alcohol and all sources of chemical exposure. But these are all things I mostly did before my diagnosis, so where does that leave me? If it didn’t stop the initial disease how could it stop a recurrence? This is a question that makes you throw up your hands.

But when I really analyze things honestly, I’ve been comparing my habits to the general population and to other people I know.  And while yes, I may have had better habits than many, in hindsight there was room for improvement, especially when I compare my prior habits against these specific, evidence-based cancer recurrence prevention recommendations. Here is a run down of my habits, pre-breast cancer:

  • I probably ate a below average amount of sugar, but I did eat it;
  • I exercised about ½ hour most weekdays and 1 hour on weekend days;
  • I’ve gained about 30 pounds over the past 30 years (I am 32 pounds heavier than I was at 18, so yes I can say I am fat. Basically I now understand that is 30 pounds of estrogen fodder for cancer cells to gorge on.)
  • Probably about half of what I ate was not organic;
  • I drank about a glass of wine a week, on average;
  • I used conventional shampoo, conditioner and deodorant, and mostly conventional cleaning products;
  • I ate little to no meat (and only then chicken), and several servings of fruits, nuts and veggies daily (My diet was really pretty good so this is probably the most annoying part for me.);
  • My stress level was often high.

It would be easy to convince myself that I already was doing what I was supposed to do and that if I keep doing what I was doing I’m meeting the recommendations. But if I’m being honest there is room for improvement. And really what choice do I have if I want to remain cancer-free?

Since my diagnosis I’ve already made some lifestyle changes consistent with what I’ve read to avoid recurrence. I’m not alone on this mission, as Fletcher has been on a (so far unsuccessful) quest to find a tasty, organic, no added-sugar, low salt pasta sauce. I started to list some things I’m doing here but realize that some of them need details so I think maybe I’ll write another post(s) that reflects my efforts to make what was good even better.

Right now I’m going to go eat lunch (left over organic sweet potato and brussels sprouts followed by an organic apple), take Advil, and see if I can manage to put on the clothes that are needed for a bike ride on this cool fall day.

 

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Why doesn’t the radiation kill the normal cells?

Why doesn’t the radiation kill the normal cells? I asked Dr. Schupak this question. I told her that I understand that the radiation damages the cancer cells’ DNA, rendering them unable to reproduce. But I didn’t understand why DNA damage doesn’t occur to normal cells during radiation. Her response struck me as sort of comical so here is my general recounting of what she said.

Whether subject to radiation or not, normal cells are always on the look out for DNA damage. They surveil, always inspecting to find and repair damage before DNA replication and cell division.

In contrast, cancer cells do one thing well: they run rampant. Its what they do. They don’t take stock. They don’t surveil. They are ready to, intend to, run rampant. Just run, run, run. Radiation therapy ties their shoelaces together and they are too stupid to know what happened. So they fall on their faces and they die.

So now I am picturing normal cells and cancer cells at the starting line for a race.

tortoiseAndHare2

Image via Flickr Creative Commons, courtesy of Doug Hansen, and altered by Fletcher.

The normal cells look tortoise-like, wear spectacles, and somehow carry both a clipboard and a box labeled “Repair Genes.”

The cancer cells look hare-like. Nervous and jumpy, they carry water bottles, and wear shorty-shorts and sneakers. A few years ago the starting pistol sounded and those damn rabbits have been running ever since.

But now, after 29 of 30 radiation therapy treatments, my body is littered with dead hares. Their limp, furry bodies are sweaty and spent, and if you look closely at their shoelaces you will see the handiwork of Dr. Schupak and her team.

Feeling too sad, because rabbits are so cute? Get over it: these were arrogant, stupid, buck-toothed, evil, red-eyed motherfuckers that wanted to kill me.

As the neutrophils and macrophages begin to deal with the dead hares, the tortoises slowly plod on by, checking, surveilling, and employing those repair genes as needed.

Slow and steady wins the race.

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What really happens during radiation therapy:

What really happens during radiation therapy:

“Not sure why my kin staked a claim here in Cleavage Valley, Linda County. There was pesticides and alcohol from back in the day, but not ‘nough for those pioneers to write home about. Sure as heck not ‘nough to mutate about. I wouldn’ta claimed it myself. Been too much gestation and lactation ‘round here for my taste. Too much clean livin’. But, hot dang! Was there estrogen! The Cancer clan weren’t rock scientists but even they knew dropped roots would grow here.

Well it was a good ‘nough place, that is until the Major Mastectomy of 2014. Thing came down like a scalpel out of nowhere. Place right ‘cross the street – gone. Just missed us over here. Some folks got spooked, moved on down the Metastatic Trail to try to settle elsewhere. After they’d gone we heard scuttlebutt of chemicals in the hinterlands, horrible chemicals that must have eventually killed those folks ‘cause we never heard from them no more.

We been trying to get by ever since. Must admit I begun to lose hope. Just before the Major Mastectomy of 2014, I recollect that there weren’t no elbow bending no more. What little pesticides there was stopped, no bisphenol-A, no phthalates. Soon after, the estrogen dwindled off to nothin’. Weird’s what it was. Bad enough, but lately there’s somethin’ worse, much worse: it’s the climate change.

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Image via Flickr Creative Commons, courtesy of Army Corp of Engineers

Each day’s hotter than the last, as though the sun’s radiation is ‘tensifying. Those beams makes it so we can’t do nothin’. It’s damaging our DNA, dagnabbit! So hot ain’t nobody can re-pro-duce. What’s already planted can’t grow, it’s fixing to whither and die. Hate to be an old croaker but I fear for our future! This keeps up we’ll be fried directly. What with the ones lost in the Major Mastectomy of 2014, those that took the Metastatic Trail and was killed by the chemicals, and us left here to die in the radiation, that’ll be the end of the line for the Cancer clan. Any who survive won’t prosper without the estrogen. Can’t even circle the wagons…..

If I’d been ‘round I could a told them homesteadin’ ancestors ‘o mine that Cleavage Valley, Linda County, weren’t no place to settle. Estrogen or no, too much clean livin’. And now we’re paying. Gonna shrivel up and die in a beam of ions. Busted…..”

 

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Home stretch?

Home stretch? I know it should feel like it but it doesn’t for some reason. Not yet. Maybe because I still feel like I’m settling into the radiation rhythm. Here is how the rhythm goes: pack my bag (carrots, almonds, apple) and pour my green tea. Drive an hour, change into a gown, lay on a table in a ridiculously uncomfortable position until I don’t think I can last one more second, get dressed, drive an hour back home. I’ve done this 10 times now, with 20 to go. A new twist just added: drive another 50 minutes to occupational therapy then drive another 50 minutes home. What happens while I’m there may be good (lymphatic massage sounds nice) or it may be bad (breaking corded lymph vessels sounds painful).

As my treatment has progressed each phase was usurped by the next. As soon as I started chemo I practically forgot about the mastectomy. Although the side effects were still lingering, having my reconstructive surgery helped me move past chemo. I figured radiation would shift the focus away from the reconstruction.

rad hazard

Most of what I read said radiation is super easy but for me, not so much. Maybe I paid a bit too much attention in physics, but radiation scares me almost as much as chemo. Concerns about what the radiation may do to my new breast mean I can’t put the reconstruction behind me. Concerns about what the radiation may do to my lymph system scares the crap out of me. I don’t want lymphedema and I don’t want to have to wear a compression sleeve for the rest of my life. If it wasn’t already obvious that I am a worrywart, it is now.

Dr. Schupak said my treatment plan is “complex,” which I guess is why my first few radiation treatments were pretty long and intense. The physicist had to come in each day to confirm the treatment plan and place monitors on my skin. While 3 technicians, a physicist and a radiation oncologist were all hovering over me, taking measurements, marking my skin, positioning this gel–pad thing that intensifies the dose, double and triple checking alignment with my tattoos, this thought popped into my head: these good people are saving my life.

I immediately knew I had to put that thought out of my mind. I wasn’t allowed to move, much less sob. But I did feel like sobbing, “You people are saving my life! Thank you for being smart, thank you for coming to work today, thank you for liking math and physics and medicine!”

I’m often guilty of over-thinking things, and it seems radiation is just heaping on things to obsess about. For the duration I need my own figurative fall out shelter. I might give guided imagery a shot. It seemed to help with chemo to think about those cancer cells dying.

fallout_shelter_sign_by_romaxp-d57o24w

In the meantime, I’m going to try to stop thinking about how much hotter hot flashes would be with a compression sleeve on. I’m going to try to stop thinking about how Dr. Disa will have trouble fixing my new breast if radiation messes it up because I know surgery on irradiated skin often fails. As that machine swings around me, clicking and buzzing, I’m going to try to stop thinking about incidental radiation dosage to my heart, thyroid and lung. And as I lay there counting the songs that are playing (my sanity-saving strategy to track how much time has actually passed versus how much time seems to have passed), to avoid sobbing I’m going to refrain from whimpering “thank you for saving my life” to the technician who reminds me to turn my head or who says I can finally, finally bring my arms down.

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I’ve recently been inspired by a stranger.

I’ve recently been inspired by a stranger. When I began to blog, which is to say when I was diagnosed with breast cancer, I searched Word Press for blogs of others who were going through what I was going through. I started following the blogs of a few women who were undergoing treatment. I’m pretty sure a search on “chemotherapy” led me to Kristina’s blog. Even though she doesn’t have breast cancer I continue to follow her blog because I appreciate her excellent writing and because a lot of the things she writes about strike a chord with me.

Kristina has 5 kids and lives in Washington State, where she gardens, crochets and bakes as she successfully battles non-hodgkins lymphoma into remission. Kristina is also an avid hiker. Not as in trails through a park – as in mountains. While I was recovering from reconstructive surgery, annoyed that the drain was preventing me from doing what I wanted to do, Kristina wrote a few posts about her progress toward her hiking goal of climbing Mount Hamilton. One post in particular spoke to me because 8 miles into one of her training hikes she thought she couldn’t rally up a steep trail but then she did.

After reading Kristina’s post, ten days after surgery, with my drain still in, I decided to hike Clayton Park (without Ralphie, in case he pulled on the leash or ran off if I let him off leash) even if Fletcher didn’t want to go. About a half an hour into my hike I was glad to be in the woods and was mentally singing Kristina’s praises, thinking what an inspiration she was. It was clear then that I could do this hike, even with my drain in, alone if I had to. It was hot but I was feeling good, strong, so I turned onto the perimeter trail, the longest and hardest one, and recalled how I used to run the entire trail.

Well just past the point of no return I realized I’d made a huge mistake. It was hot – really hot. Hello?! What was I thinking – I was recovering from surgery, and still sort of recovering from chemo. I had neuropathy in my toes. I had a tube draining fluid out of me. It was suddenly obvious that I was not Kristina. Damn her, with her writing skills and her stamina! I’d made a dumb mistake. I’d forgotten how hilly the backside is along the ravine, how punishing the roots and rocks are, the time I’d fallen and bloodied my legs and shoulder. My memory flashed back to a Thanksgiving afternoon when I sprained my ankle and had to call Fletcher to rescue me. As darkness descended, our voices volleyed and echoed through the woods as he tried to locate me and piggyback me out. Would I need to be rescued again?

 trail photo

It took me 85 minutes to make my way out of the woods, the scarf on my peach-fuzz-covered head actually dripping with sweat. I don’t know what made me stop and take the world’s most miserable selfie but I did.

 miserable selfie

When I finally did make my way out, and guzzled down a bottle of water, my perspective shifted back again and I was mentally thanking Kristina for inspiring me to kick my own butt! I felt more like myself than I have for the past 8 months. I did it and felt so strong and happy with myself. You don’t know me but, thank you Kristina!

I’ll continue to read Kristina’s posts. She’s written about how your focus goes to the micro level when you are undergoing treatment. During chemo I was focused not just on one day at a time but one hour at a time or the next 15 minutes. The longer view is gradually coming back –I’m up to a few days at a time now, provided that none of the days have any higher expectation for me than maybe a doctor appointment. She’s dealt with post-treatment anxiety, which I experienced a touch of last week at the mere thought of going back to work between surgery and radiation. She’s written about what I’ve been thinking: Will I be the same person that I was before when all this is done? Will I always be thinking about cancer? Here is a link to her blog if you want to check it out: http://neverlaughatlivedragons.com

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Who took my rose-colored glasses?

Who took my rose-colored glasses? Without them I’m in limbo-land, my own personal time warp. The pain when I move, or the sleep that won’t come, prompts mid-night pharmaceutical intervention and a late start the next day. But a late start to what? Reading on the patio if it’s not too hot, cleaning off my desk if it is. I’m bored and frustrated, unable to even go for a walk the past few days. I don’t even feel like writing but I’m forcing myself to do it.

I had reconstructive surgery 5 days ago and expected to feel way better than I do. I am so done with all of this. I was told this surgery would be much easier than the mastectomy so maybe my expectations were unrealistic. More scar tissue than expected means I have a drain I thought I’d be able to avoid. My skin is super sensitive to the clear tape they use to stick the drain tube to my torso so I feel itchy there and uncomfortable. The wide elastic band I have to wear tight around the top of my chest tethers the new breast in its place while at the same time punishing my old breast for something it didn’t do. And again the constipation! What is up with that!? Finally, just when I was thinking that I was feeling free of chemo side effects the very recognizable chemo-fatigue, which may re-appear over the next weeks/months, arrived late this afternoon. I’ve read every book in the house and finished the last back episode of Breaking Bad season 5 two days ago, so what am I supposed to do now? Watch Dr. Oz’s parade of misinformed women??? I’d never watched it before but that show pisses me off.

 

Dead_Freight_Walt_Heisenberg_hat-rose2

I interrupt this complaint-fest for a special bulletin:  The writing catharsis worked and my rose-colored glasses have been located. I apologize for the interruption. I now resume my regular programming. 

I just ran my palm over my scalp-full of luxurious peach fuzz (again and again – I can’t stop touching it!). Then I glanced down at my legs to see the best tan this freckled redhead has ever had, adorned with wispy, blonde leg hair. Yup, I’ve got the leg hair of a four-year-old. And the rock hard tissue expander is gone (along with its razor-edge torments to my armpit), replaced with my newly reconstructed breast, malleable and in its proper location. I’ll get the drain removed by the end of the week and probably be able to swim in a few weeks. With mastectomy, chemo and now reconstruction behind me, and only radiation left to go, I am ¾ of the way through treatment.

Ah, catharsis. Instead of oxycodone, maybe I should just write.

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