Chop Wood, Carry Water

Speechless, yet so much to say. I don’t have the energy or the eloquence to add my voice to the din, nothing to say that isn’t already being said and too sad and disappointed to even try. I found this beautiful essay helpful.

BREVITY's Nonfiction Blog

14324288_10155236661220558_5376449924283212640_oWe woke up and everything was different. Maybe we woke in the middle of the night, tried not to check our phone, checked our phone anyway, and spent the hours before dawn in a bleak haze, waiting for the moment it was late enough to decently call someone. Maybe a call came—your mother has died. Or, it’s time to let the cat go. Or, our country has elected a demagogue.

Maybe we woke to the memory of yesterday, the doctor saying, Let’s discuss your options, our lover telling us they’ve found someone else—found her, in fact, months ago. All we want is to go back to sleep, back in time, to the moment before the disaster, the break-up, the crash, to the moment of sweet unknowing, when everything was still OK.

How can we write? How can we read?

How can we possibly address the page with our life…

View original post 651 more words

Posted in Uncategorized | Leave a comment

When I first met Fletcher

When I first met Fletcher he spoke a language that was as foreign as that thing between his legs. Not that thing (get your mind out of the gutter), his bike. It was sleek and lightweight, like no bike I knew existed. Cadence, peloton and derailleur, he said. Lead, filly and fetlock, I replied. What I rode was furry and four legged. Temperamental, strong and fast. The effort and reward was not in the distance, the climb or the sprint, but in the staying on, the balance, the going with, gracefully. While he was just sweaty when he spoke his language, I was sweaty, dirty and smelly when I spoke mine.

I also knew a cool language my father taught me as a child. He said goggles and lanes, he spoke of stroke and free and fly laps. And other languages I taught myself: I said endorphins, kilometers, pronation and, if truth be told, shin splints and planter fasciitis, orthotics and RICE. After a few decades, on fifteen degree, snowy mornings, tadasana and namaste rolled easily off the tongue, much easier than Yak Tracks.

Horses moved me, both literally and figuratively. I was buoyed by my father and by water. Running made me strong but hurt me. Yoga made me stronger and healed me.

Over the years I’ve been immersed in Fletcher’s culture, and advanced my fluency in his language. I can hold a line, ride a wheel, clip in and more importantly clip out. I understand the physique of a climber vs. a sprinter, the role of the domestique. I know enough to comply when he suggests another layer, booties and knee warmers on what seems like a perfectly warm spring day. Together we spoke it through chemo and through radiation. We spoke it during the spring classics, and now through the Tour De France.

then……………………………………………………………………….now

I spoke my native tongue with a neighbor for a few hours the other day. I hadn’t ridden in about five years. Dressage, she said. Diagonal, I replied. It was awesome. Just like riding a bike, you never forget. I vow to speak it more often.

We admire those who speak multiple languages, and I’ve tried to get Fletcher to be multi-lingual. But some prefer to go deep instead of broad.* My skills in each of these are conversational while Fletcher’s fluency in his native tongue is dissertation material. He says hill repeats, intervals, and century. While I can say, “have a nice day” and “where is the restroom” five ways, in his one language he understands dialects, can diagram sentences, critique the literature.

As I write this he is talking to himself for 30 miles in 95-degree heat while I, more sensibly, put on my bathing suit.

CW3A1238.JPG-20569 gran climb1

*Plus he doesn’t like to get wet, is convinced that he looks funny when he runs, and would have a roomful of yogis in stitches.

Posted in Truth, Uncategorized | Tagged , , , , , , , , | Leave a comment

So how am I?

So how am I? How am I, really? Now that I am exactly 2 years out from the start of my treatment, a time that felt like armageddon, its a good time to reflect on where things stand. I’ve just completed a portion of a periodic survey about breast reconstruction, for research in which I agreed to participate via Sloan, and writing about the survey seems like good context for an update.

The Sloan survey asks about the character and intensity of my pain, offering words like shooting, throbbing, sharp, and about 10 other adjectives that I’m glad not to be experiencing. From 0-10, I am happy to give them each a 0. But there is no single word in their survey that describes my physical state: the sensation that a rock is tethered to my chest, making breathing deep while sitting erect feel like a tedious athletic event. It’s hard to refrain from pulling and pushing at my breast when in mixed company, a habit I’ve developed, with the encouragement of my therapist, in an effort to free myself from scar tissue’s grips. But by the survey, which offers no option for comments, I’m doing just fine.

The survey also asks many questions about how satisfied I am with my reconstruction, both look and feel, from every perspective possible, and how it has affected my self-confidence, mental health, and ability to fully participate in daily activities, whether clothed or unclothed. Here my answers reflect satisfaction, but again I’m frustrated by what is not asked. There are no questions about how much longer it takes to dress in the morning, evaluating each choice as to whether it accentuates the unevenness of my breasts, which oddly seems different each day. I also don’t want to give answers that would be negative reflections on the work of my doctors. I know that my outcome is not just my reconstruction, but my reconstruction nuked with radiation that continues to affect all my tissue around my implant. If it’s not perfect it’s not the fault of my plastic surgeon. There is no place on the survey to say that, still, 2 years out, most days are good but some others are bad. It is also hard to compartmentalize my reconstruction and consider it alone without linking it to my total cancer experience including medication side effects, odd things like blood blisters on my tongue, and recent inexplicable exhaustion.

And my answers are skewed by consideration of some alternatives. For example, there is a question that asks whether I would make the same choice for reconstruction again. Of course I answer yes. But it is a question that throws me because it affirms my fear that it could happen again, and prompts contemplation of what things would be like if I had not had reconstruction, thereby hurling me down the path of second-guessing. And, there wasn’t really a choice, was there? My choice was between bad and worse. Again, it’s hard to compartmentalize on the reconstruction part and say yes I’d do it again without feeling like I am somehow saying: Cancer, again? Sure, bring it on.

Finally, when I’m answering the survey I tend to paint a rosy picture. I can’t explain it other than to say for every issue it asks about, whether pain, self-image or depression, I can’t help but be thankful to be alive. Yes I would do it again. Yes I can deal with the tightness. Yes I can find something to wear that will camouflage my unevenness. Yes I can deal with depression, with obsessing that every odd physical sensation heralds cancer’s return.

Here’s what I would say if there were a comments section in the survey: This survey may help Sloan get a 30,000-foot view of reconstruction outcomes on thousands of patients but it should not be assumed to accurately reflect the experience of any single patient. There are things that I experience that you don’t ask about. There are questions that I could answer with both a 1 or a 10 depending on what day it is. I lie on some answers because the questions seem to try to provoke disloyalty to my doctors. You remember them: the people who saved my life! I feel very strongly about this in particular, maybe to an irrational degree, but it demonstrates how inadequate the survey is: you survey-bastards will not get me to betray them and have me admit to being dissatisfied with their work. They did their best when I was at my lowest. The survey forces simple answers to questions on which a whole blog post can barely scratch the emotional surface.

When I agreed to participate in the research, back before the start of my treatment, it seemed like answering periodic surveys was the least I could do, and I remain glad to do it if there is any potential benefit. Indeed, I’ve learned over the past few years how much I’ve benefited by the agreement of those treated before me to participate in clinical trials. As a scientist I understand that this survey is well designed and the only possible way to collect unbiased, objective data from thousands of patients. But as a human being, cancer patient and breast reconstruction beneficiary, my answers on the survey don’t begin to reflect my total reconstruction experience.

So how am I? Really? I’m fine. Really good, actually. At 2 years out I’m way better than I was a year ago and I truly expect to be better yet a year from now. On February 13, 2014, during my mastectomy, a record-breaking blizzard raged outside. On February 13, 2016, as I do yoga I watch the wind scatter a few flurries across the patio. That pretty much sums it up.

IMG_1218

Roosevelt, NJ February 13, 2016

Posted in Truth, Uncategorized | Tagged , , , , , , | Leave a comment

“♬ Julia’s Sweat Shop! Julia’s Sweat Shop! ♬”

“♬ Julia’s Sweat Shop! Julia’s Sweat Shop! ♬” Julia sang her little ditty as I huffed the goose down out of my nose. It clung to the dry skin on my fingers as I threaded the needle.

A week earlier she showed me her new down jacket. “It’s nice but too short. You’ll be cold. Exchange it for one that covers your hiney,” I told her. The child who never takes my advice returned the following week with another down jacket, this one almost to her knees. “I need you to make it shorter, to mid-thigh,” Julia announced. Me and my big mouth. I didn’t know whether to laugh or cry.

I have a love/hate relationship with sewing. I have clear memories of admiring my Granny’s expert handiwork and growing confident under her patient tutelage. I know it’s in my genes, not just because my sister is a sewing prodigy, but also because I’ve made tailored men’s shirts, pants and sports jackets, along with dresses, baby clothes and too many curtains to count.

But the last few times I attempted to sew the process was painful. I literally burst into tears trying to sew piping, which I’d made, into the seams of pillows I was making out the world’s slipperiest crushed velour fabric on which Julia had hand-painted beautiful designs.

elmsplk.jpgalkoj.jpg I didn’t get a photo of the jacket before she left for NYC but here are the pillows that made me cry.

Since then, I am averse to the needle. The words “Just cut it and sew it under,” “Make it thinner on this part,” “If I cut this off you can just sew some elastic on, right?” all make me cringe.

But Julia is quite a bully persistent and, realizing this was a battle I was likely to lose, I found myself contemplating exactly where one would cut the coat so that the bottom would line up with the zipper and the pockets wouldn’t hang out the bottom. I thought about how one might finish the inside hem and how to integrate the lining. What I didn’t think about was exactly how unruly goose down might be.

Upon the discovery that we had no black thread my heart did a little dance, thinking I was off the hook. But Julia called her Grandma who had plenty of black thread. Damn. Since there was no saying no at this point, while she was fetching the thread I made the cut. I slowly, steadily fed the discarded few inches into a ziplock bag, yet I still had small bits of down floating around me the following day at work. A week later Laila revealed that the secret is to wet the down. Well in hindsight it’s obvious that if you need advice on how to wrangle goose down you should consult with a Norwegian! Da!

By the time Julia returned I’d found some iron-on seam binding and sealed off the edge, ready to sew up the hem. Julia sat nearby to keep me on task, as she wanted to wear the jacket back to NYC within the hour. The pressure was on. My sewing machine groaned, threatening to seize up as it sometimes does, somehow sensing my rushed anxiety. I was getting irritated. That’s when the Sweat Shop song started, and she started filming me with goose down stuck to my arms. Next she held up her phone, blasting the song Wind Beneath My Wings: “♬ Did you ever know that you’re my hero? ♬”    Between Julia’s Sweat Shop ditty and this spirited finale I couldn’t even be mad at her for making me sew! The jacket doesn’t look half bad, and at least I know she’ll be warm this winter.

Posted in Truth, Uncategorized | Tagged , , | 5 Comments

Last swim of the summer

In this concrete vessel of cool chlorination

The water held me up,

Tirelessly resisted my strokes

From end

To end

And again.

All summer, the early morning sun peeked over the trees

And spilled daylight on my wet head.

But it was the alchemy of low afternoon sun

On this late summer day

That transmuted plain water into

A brilliant white purple mercurial elixir.

I floated there alone for a long while.

Last swim of the summer

– Perfection

last swim of summer

Posted in Uncategorized | Tagged , | Leave a comment

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

Posted in Uncategorized | Tagged , , , , | Leave a comment

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.

************************************************************************************

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

Posted in Uncategorized | Tagged , , , | 1 Comment

These are the ramblings of a middle-aged parent

IMG_7412_2

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.

IMG_7422

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.

IMG_7417_2

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.

Posted in Truth, Uncategorized | Tagged , , , , , , | 3 Comments

“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.

Posted in Truth, Uncategorized | Tagged , , , , , , , , , | 2 Comments

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.

 

Posted in Truth, Uncategorized | Tagged , , | 2 Comments