Three Days

{Editor's Note: In the midst of Harvey, talking about anything else seems weird, but I'll forget if I don't write now, so please forgive.}

There are three days of radiation left. Today was my last radiation oncology appointment until follow-ups. I apparently missed a medical oncologist appointment scheduled for today. I didn't realize they scheduled it. I was hoping to hit my out-of-pocket max before seeing her again. It will be here soon, and then the Festival of Specialists and Scans will begin, because hey, I can pretend to be Canadian for four months! Fully covered healthcare!

The therapists and nurse and doctor clucked over my skin, which is fuchsia bordering on purple in places and covered in dark brown dots, as though my pores tanned darker than I ever have. I'd take a picture, but some people get queasy with such things and anyway, it's less a bid for sympathy than a seriouslyIdidn'tknowskincouldlooklikethis sort of a situation. It burns and itches on the inside and the outside, but that should fade soon. (If you really want to know, this is not me but you can see the weird red-with-brown-dots here: http://www.independent.co.uk/life-style/health-and-families/health-news/breast-cancer-isn-t-sexy-woman-shares-post-radiation-images-to-show-reality-of-disease-a6709516.html?amp)

The doctor looked at my chart and noted how the time has flown since my diagnosis in April and I thought, well, hell, MAYBE FOR YOU BUT THIS HAS BEEN THE LONGEST SUMMER OF MY NATURAL BORN LIFE but I nodded and smiled because my husband was there and he hates drama. I like that he came with me both so I wouldn't forget what people said but also I'd avoid thoroughly embarrassing myself by going Britney all over the office with three treatments left. But oh, the tantrums I threw in my mind's eye! Then my husband pointed out oncology folks have to be up all the time because can you imagine a cynical and disengaged cancer doctor who hates his job? Okay, fine. Point taken. G is always so damn rational.

It's nearly over, though the doc said I'd continue to crackle for another few weeks as the radiation sterilized me from the inside out. He did mention recurrence is indeed lower when radiation is combined with lumpectomy, leading him to believe no matter the margins some errant cells can be left behind and the radiation is the final sweep before you close the door and lock it behind you, hoping to never open it again. I'll accept that explanation and the symptoms that are the cover charge.

ONWARD.

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Stories I'm Listening To

Since I've started my new job (at almost seven months in, it's almost not new anymore), I've endured an hour-long commute each way. Some days, when Beloved is in town, we carpool. Other days, when I drive myself, I've discovered Overdrive, which allows me to check audiobooks out from my library for free. I've never been much for thrillers, but I-70 is so horrifying with people going from 75 miles an hour to full stop while texting, that I've realized thrillers and biographies are about as deep as I can go while driving. Plus the cumulative fatigue from radiation makes me want to fall asleep when the traffic gets slow, so I need some action on the audiobook to keep me awake.

As far as thrillers go, I've enjoyed Ruth Ware, particularly as all her audiobooks are narrated by Imogene Church, whose British accent makes both "What?" and "Stupid!" sound like the most profound words ever spoken in the English language. This last week, I also listened to AMERICAN SNIPER, the autobiography of celebrated sniper Chris Kyle, and that inspired a spirited discussion at home regarding war and the mindset required for war and my own personal existential crises triggered by war (in high school I discovered CATCH-22, the first book to truly encapsulate the way I feel about war, so that pretty much explains my perspective). I'm pretty sure we agreed to disagree, with my husband assured we'd all die if I were in charge, and I assured that if we did, it would be with a clear conscience.

Prior to Ruth, I went through another of my Neil Gaiman phases. Let me recommend anything by Neil Gaiman on audiobook, because he reads all his own stuff. NEVERWHERE is particularly wonderful, and you'll never think of the London tube system in the same way ever again. I haven't even been to London, but the angel of Islington is on my mind all the time.

Listening to books is so much different than reading them. You're still living in someone's head, but it's a much slower process. I remember when my third grade teacher used to read to us, particularly BUNNICULA. How soothing it is to be read to. I only wish I could do voices. I'd surely love to be an audiobook talent if I could do voices and accents. Alas.

Where was I going with this? The stories. The days have started to bleed together, and I've had to take walks every day at work to avoid falling asleep from the radiation fatigue. When I go for walks, I wear my headphones, and I listen to my stories. For most of this month, I was in Fallujah and Ramadi hearing about badasses, then it flipped to a reach in England I can't find when I try to look it up. I was hoping it was based on a real place so I could see it, the way I searched in vain for Stephen King's DUMA KEY.

The stories have also interspersed with my stress dreams. There's the one where I'm cleaning grout in my bathroom. There's the one where I'm trying to step on the brakes in Vicki the destroyed convertible, and the car won't stop. There's the recurring one where I'm going back to college again, even though I went twice, but this time I have nowhere to live and the stress of finding somewhere to sleep is all I can concentrate on.

I keep having these dreams where I work all night, and I wake up with my neck muscles tight, feeling like I haven't slept at all.

And so, in a sleep-drunk blur, I immerse myself back in the stories.

When my leg was broken, I read my way through Stephen King's THE DARK TOWER series. Now my Goodreads list functions like a touchstone for what I'm going through, business books reflecting my ambition and political autobiographies and novels my confusion about the stories the news is telling me.

Truth be told, I'm a little scared by the changing weather patterns and the hostility between nations.

Truth be told, I'd rather read novels than the nightly news. At this point, truth is stranger than fiction.

I'm still working on my own stories, but more and more I'm adding my own life back into something that was supposed to be entirely fiction. We'll see if that works. Maybe it won't. At the end of the day, immersing myself in stories feels better than immersing myself in the chaos going on in the world.

 

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Radiation Booster

I am supposed to be at a Royals game with Doug French right now. I'm not, because in spite of the fact he's in town this week only, I had to text him while bawling in the parking of KU Cancer Center in Lee's Summit and tell him I just couldn't do it. I needed to go home.

I went in to my third week of radiation expecting to be in and out in about fifteen minutes, like usual. That is not what happened.

Let me preface this by saying my cancer team is made up of decent, good people. There is not a bad apple among them. That said, I think it must be very easy for people who treat lots of cases to forget that for most people they treat, this is the first time. It's a good lesson to remember in any job you do, whether you drive a school bus or operate on people's spines or manage new college graduates -- if you interact with the public, some of the people you deal with are scared or intimidated, and it's not only your job to do your job, it's also your job to monitor them and respond in kind. If you want to be really good at what you do, that is. This is a lesson I'm internalizing through this experience, and I hope it makes me a better person overall.

Today after I lay down (this is the closest approximation visually I can find) and closed my eyes and listened for the beep and thought to myself that this is the second-to-last week, this will soon be over, the therapist came out and told me for the second half of treatment, the doctor would come out and draw on me for "the boost."*

I did not know what the boost was. I did not know the boost was coming. There was no warning about said boost.

I did not know they were going to fucking boost my radiation. With a large attachment that looked like the machine Dr. Evil uses. This is the best pic I could find that looks like the normal radiation machine. Now picture a huge scope that stops about an inch from the lumpectomy scar. That's the booster ray, or whatever it is technically called.

I'm lying there, and one of the therapists whips out a Sharpie and starts drawing on me, making some notes that she keeps on a piece of paper she rests on my stomach, like a desk. They chitted and chatted and breathed and sang to Phil Collins, and the longer it took, the more I started to get ANGRY. I was angry to be the one on the table. I was angry about the new bill that shows up every damn week saying I owe hundreds of dollars after insurance. I was angry this was taking so long. I was angry I was half-naked for the fifty-first time in front of virtual strangers.

At one point the therapist apologized for the awkward positioning, and I replied that everything about this entire experience is awkward, and she took it wrong. She said, "I suppose at some point, you're like, whatever," she says good-naturedly. "I don't even see nudity anymore. I just see tattoos."

I know she meant well, but I do not feel whatever about my health or my body. I still think of myself as having to lie there half-naked. I would still like my dignity back. I would still prefer not to have people draw on my secondary sex characteristics with permanent art supplies. I would still prefer to be a person and not a pound of flesh.

I would still prefer for this shit to be over and to have my chest back to myself, beat up, scarred, smaller and burned though it may be.

I refrained from punching her, because at no time has this experience become "whatever." At every time I have wished for my dignity back, and to not to have to bare my breasts to half of Jackson county, and to not have to have Sharpie marks and tattoos that mess up my expensive bras and to not have nurses tell me to just slather on creams to stop the itching that leach through said bras to my professional clothing, and oh, by the way, I haven't been able to stop working in that professional clothing during this experience, so if my left breast goes up in flames during a meeting about open enrollment, I can neither itch it or go slather on cream. I just have to white-knuckle my way through.

Life does not stop for cancer.

After all that is done, the radiation oncologist and I chit-chat about the typhoon we had in KC last night, and then he gives me some suggestions for other creams. The nurse explains to me what radiation feels like, even though she's never had it. Anger wells up in my chest again at this woman who thinks she knows what radiation feels like well enough to explain it to me.

I cry in the parking lot. I text Doug to tell him I can't do it. I just can't stop crying to make it to a baseball game in less than an hour. My mascara is around my knees and I'm still wearing my work clothes and I have to find itch cream.

I apologize. He's like, "For enduring radiation? Please." And that's how I know our eleven years of friendship is so worthwhile - those friendships I made while blogging are so worthwhile. I know I'm not around as much, but you are my people in a way the 90 percent of my people in my new day-to-day probably will never be, because I'll probably never show them as much of me as I have shown you.

I stopped crying finally. I drove to CVS. I looked on the shelf for the anti-itch new cream. I couldn't find it. I went to the pharmacy counter and got a guy to come look for me. Finally, he says, "What is this for?" And I say, "Radiation burns."

AND HE STARTED MANSPLAINING HOW RADIATION BURNS ARE JUST FOR MOISTURE BECAUSE THEY DON'T HURT.

Friends, that young man is really a lucky young man, because I am able to control myself.

I muttered I'd probably go with my radiation oncologist's recommendation and went home and cried some more. I told Doug I'd make this funny when I blogged it, but it's still not funny. It just sucks.

However, there are only eight more treatments left. Eight treatments until I get to stop thinking about cancer for the first time since April. Maybe there will be some smooth water.

This week is the one-year anniversary week of my lay-off from SheKnows Media.

It's been a year. I got laid off. I got a new job. Two months in, I got cancer. I'm almost done with cancer treatment. It's almost G's birthday. He'll be forty-four.

ONWARD.

*According to science, the boost does work for DCIS patients, of which I am one. SCIENCE.

8/22

Two weeks down, three to go of radiation. My skin is starting to stay red all the time, like a sunburn, and I'm getting the zaps. It feels occasionally like when my inner stitches popped after my lumpectomy: minor pain like sparks just randomly in the core of my breast.

Mostly, though, I've found my lifestyle isn't conducive to fatigue.

Last week we had two riding lessons, a birthday dinner and the blonde fairy. Friday night I tried to use a massage gift card only to be told not until I'm done with radiation. I was tired by then, so in a weird way I was relieved to be excused from relaxation so I could go home to collapse on the couch.

Today I forgot the keys to the tack box (40 minute round trip) and the swim bag (10 minute round trip). It's like when the little angel didn't sleep and I'd find my keys in the fridge. I really can't be trusted to remember things right now. Please send a butler and a driver.

I decided to take a radiation vacation on my last three days of treatment just to know if the fatigue continues to build, I at least won't have to perform at work for a few days. I'm looking forward to the opportunity to collapse into the couch cushions for a few days and focus on putting this latest health bullshit behind me.

That is three weeks away. Three weeks hasn't seemed this long since high school.

ONWARD.

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The Start of Radiation


Today I had my first radiation treatment. When I walked into the dressing room I've been in several times before, I noticed the dirty laundry bag.

IMG_6305(1)(I inquired whether either I or my clothing were actually radioactive biohazards, and they assured me the linen bags were misleading and needed to be replaced.)

 

The person who does the radiation (nurse? specialist?) led me back to the room, which she assured me was always dark and cold. There, in the middle of the floor, was a bench with the same 50 SHADES OF GREY pegs to hold onto above your head.

We quickly dispensed with the niceties of the cape, and I gripped the handles and shut my eyes while the woman told me to just lie there "like a sack of potatoes" while they manuevered me into the proper position for nuclear reaction. (I don't know if that's exactly what radiation is, but hey.)

Then they took about 35 X-rays while speaking to me through an intercom. They assured me they could see me and hear me via microphones and two TV monitors in case I decided to freak out. As I listened to today's line-up, "Jack and Diane" and something I feel very confident was by the Black Eyed Peas, I stared at two red lights in the ceiling, wondering if they were the lasers that would radiate me.

Then I wondered if my eyes might laser shut.

This morning, I didn't put on dry shampoo because the ingredient list contained aluminum, and they told me not to wear normal deoderant that works in summer because it contained aluminum and I pictured my head starting on fire.

Then I wondered, while waiting there, if my shorts would actually become radioactive, which would make me sad, because they are both linen and Athleta and those are two things I don't have a lot of in my life.

I listened to "Jack and Diane" and wondered if my entire cancer experience would be narrated by '80s hits while the machine reared up its head and started rotating its way around me. It didn't actually show any laser beams, as I had anticipated, but it fried one side of me then rotated around and hit the other, all in the space of about ten minutes.

I went back to the closet and put on my clothes. A nurse took me into a room and told me about the healing properties of aloe vera, which the lab pharmacy would sell me at cost for ~$2. When and if the burns got worse, she had samples of other lotions that I own from when the little angel was a very chapped-face baby.

She said the fatigue was cumulative, so I probably wouldn't notice it for a while, and if I felt tired, I should get some exercise. I realize that seems counter-intuitive, but I've always found the if you can't take a nap, the best cure for a case of the tireds is a brisk walk around the block, preferably outside.

They gave me a schedule leading up until the Friday before Labor Day. I left. I sold some books at Half-Price Books. I bought some hanging plants on clearance at Walmart that I thought I could save from certain Walmart death. I took them home. I hung them up and gave them plant food and water. I ate dinner with my parents and the little angel.

I thought maybe this radiation thing won't be so bad.

It remains to be seen. They say the fatigue and skin burns will come later. But the worst fatigue I've ever felt in my life came when I was unemployed and not taking my meds for microscopic colitis and I developed a Vitamin D absorption problem and my friends, I wasn't sure if I would ever be able to work again because I COULD NOT WAKE UP in the mornings. Fortunately, now I take 50,000 units of Vitamin D once a week and I get up before seven on the daily, but let me tell you if something is off with your body the struggle is real even to get out of bed. I always used to think people were exaggerating. Not anymore. There are lots of people who struggle with chronic fatigue every day. Please understand that feels like not trusting your body to rev up at all. It's terrifying to think you might actually not be able to get out of bed. I hope I never experience that fear again.

So, in a way, having a Vitamin D deficiency, after one day, was scarier than radiation. For sure having a broken leg and a plate put in was scarier than radiation.

It's funny. I always thought cancer treatment would be the scariest thing ever. I realize I'm at the low end of the scale, but it's still cancer treatment. I now measure medical hell on a scale of CAN I MOVE to OMG I MAY NEVER WALK AGAIN.

There have been a lot of moments along the way on this cancer journey where I've seriously questioned my ability to go on, but today is not one of them. But, tomorrow I'll be two hours late to work because of radiation. And that will go on, two hours late or two hours gone early, for 22 work days. That's the hard part, the logistics. The hard part is not fighting cancer, but fighting cancer while the rest of the world goes on like everything is normal when it is so not normal for you.

ONWARD.