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.

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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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Constant World

 

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Constant World

Mid-morning sings

A summer song on my small town street.

 

Where the street crosses the creek

The woods muscle right up to the edge.

Someone watches me from in there.

What is she doing here?

 

Mid-morning sings

A summer song on my small town street

Whether I am in air-conditioned steel, glass and concrete

Saving the world.

Or walking here.

Or gone.

 

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Ralphie wants to know

Ralphie wants to know why I am no longer a frenzy of activity. Why am I acting like a dog, lying around all the time? He thinks it obvious that the loveseat isn’t big enough for both of us. Yes he is in a mid-afternoon catatonic sleep-stupor, and yes he doesn’t mind dosing with a pack member, but why must I hug him on the tiny couch? He wants to know.

 

photoOfRalphie

I disturb him repeatedly throughout the day. I go out on the patio. I come in again. Other than the in and the out, he wants to know why I haven’t left the house for days. He is sleep-deprived. It is pretty clear he is sick of me. I am sick of his barking for no apparent reason and mad at myself for yelling at him when he does because I know there actually is a non-apparent reason, a strange smell or sound, to which as a non-canine I am oblivious. I know that to bark is his nature. It’s still annoying. Sometimes I make him sit facing the corner until he stops. In my evil mind (which he cannot read so I don’t worry about hurting his feelings) he is wearing a dunce cap.

He also wants to know why our walks are less frequent. And shorter. And slower. And if they are going to be that slow why can’t we just stop instead and spend the whole time sniffing because really what is the point if we are going to walk that slowly? He wants to know.

I tell him I am taking him to the vet to have his nails cut because although I have the eon that it takes to file them, which he hates, instead of cutting them which he vehemently loathes, I worry about breathing in powdered dog toenails. Plus I have no patience for his nonsense. His nonsense includes slinking away, jerking his paws away, acting like I am trying to kill him, etc.

So my plan for Monday is that we two pack members will leave the house and go to the vet where they will take him in the back to do the deed without any effort or involvement on my part. Tap, tap, tap: his long nails will sound on the linoleum floor as he trots away with the smiling vet tech into the back while I sit in the waiting room. Five minutes later they will bring him back to me, padding silently as if wearing slippers. He will be happy to see me because he will think we’ve been apart all day. I will be happy to pay $12 and know that the few nose hairs I have left are free of powdered dog toenails.

After that we will head home, I will give him a pumpkin treat, then we will nap on the loveseat together. I will dream of the longer walks we’ll take in 3 weeks’ time when chemo is done, and how the asphalt will keep his nails in check. He will dream of being pursued by the vet tech with the nail clippers and keep me awake with his stifled, whimper cries and shuffling paws.

 

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A blast from the past arrived by mail last week.

A blast from the past arrived by mail last week. My old friend Jules Spills sent a get-well card, along with a gigantic, squashed Tootsie Roll.

 photo

It’s probably been close to 15 years since I’ve seen Jules. Years ago Jules found numerous occasions to pen some creative verses, which he may be surprised to know I still have stashed away somewhere. I wish I had the energy to dig them out, as I know they would be as entertaining as this new one is. I thought I’d reproduce what he sent here for the amusement of my friends who know him and who may read this. It is classic Jules. It confirms that he is still the self-depreciating Jules we all know and love. I hope someone lets Jules know how very much I appreciated his card and how much it cheered me up to hear from him.

Here is what was written inside the card:

I’m sure you’ve heard all the tired litanies of sympathy and shock and encouragement, of that I have no doubt.

And I already know you’re so awesome and tough that everything’s going to be fine, so that’s not what this rhyme is about.

I think what you need is an adage that my family and friends say when things seem really bleak, when you feel you’re rowing without a paddle up the proverbial shit’s creek:

When the effects from the chemotherapy make you want to scream,

When you’re pissed that you can’t bike or run without running out of steam,

When everyone coddles you like you’re a baby when you want to be treated just like before,

When you have to wear a hat to keep your head warm before you walk out the door,

When you’re tired of taking all the pills and following all the rules,

When the nurses and the doctors and Fletcher, as usual, all seem like complete fools,

Just remember this when everything seems so grim that you feel you’re at the bottom of the deepest pools:

It could always be worse, you could be Jules.

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I swam 11 steroid-fueled laps today

I swam 11 steroid-fueled laps today, a much more enjoyable way to increase my range of motion than physical therapy. (I won’t say how long it took me.) Then I cleaned the bedroom, including Sweetie’s vomitorium under the bed. Ah, steroids. This is the most I’ve accomplished in a single day in months. I just kept thinking of getting stuff done in advance of the Taxol-triggered bone pain that I expect will kick in tomorrow and knock me out for 4 days.  At least I won’t be laying there thinking of rock-hard cat vomit under the bed.  She looks so innocent, doesn’t she?

 photo

On another note, I overheard this brief conversation between a cancer patient and nurse Raymond in the waiting room at Memorial Sloan Kettering treatment center:

“Hello, Raymond.”

“Hey! Hello! Good to see you!”

“Good to see you too.” Then the patient added as he ambled away, “Good to see anyone.”

‘Nuf said.

 

 

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