Thursday, August 28, 2014


Carle knows me pretty well by now.  She knows if I’m tired before I say it, she knows if I’m hurting before I try to move my arms above my head.  She gets me.  So I wasn’t all that surprised when she took one look at my skin and suggested calling in one of the oncologists before proceeding with today’s treatment; she knows my body well enough to know it wasn’t doing so hot.  Pun intended.

My oncologist, Alice, is on vacation.  So Carle called in a doctor whose name I can never remember.  But I know it starts with a C and I know she’s really friendly and kind, and so in my head, I think of her as Mrs. C, from Happy Days.  The actual oncologist doesn’t look anything like Marion Ross (A/K/A Mrs. Cunningham), but it’s a lighthearted and safe image with which I feel comfortable.  Plus, Happy Days was set in Wisconsin, so she’s kinda like one of my countrywomen.  

Anyway, Dr. C examined my skin and immediately started talking about how I might want to think about taking a break from treatment.  We talked about how raw and open my skin is, how the burning is getting pretty bad, and she thought a few days off might help at least a bit.  She assured me it’s safe to take a day or two off – it won’t limit the effectiveness of my treatment.  She also told me something I didn’t know: it takes 3-5 days for the effects of the radiation to show up.  So what I’m seeing and feeling now is only the result of what’s happened as of last week.  In other words, it’s going to get much worse before it gets any better.  

As it is, my nipple is in constant pain.  It’s a combination of nerve pain and just, well, burning.  My areola looks like a drought zone, filled with deep cracking and at least 4 distinct shades of burnt red.  My surgical incision randomly jolts me with electrical zaps of regenerating nerve pain.  But my armpit is probably the worst of all: it is open and raw, and of course is constantly rubbing on itself.   So it hurts to move my arm, it hurts to wear anything with sleeves, it hurts to even shower.  And let’s not even discuss how hard it is to find a comfortable position for sleeping.

(Interesting note: Hair stops growing in areas being radiated.  So my armpit, which is already half-red and half-white, is also half-hairless and half-fuzzy -- it became way too irritated to shave anymore about 2 weeks ago.  So basically I’m currently rocking the weirdest looking armpit west of the Mississippi.)

I decided to go ahead and get today’s treatment, since I was already there and lined up on the table; that part of me that doesn’t want to admit how weak and human I really am decided I could just tough it out, despite the fact that all I really wanted to do was get the hell out of that place as quickly as I possibly could.  And then take a nap.

But we did the regular treatment, and then Carle did some extra work to prepare me for my upcoming “boost.”  The boost is not as much fun as it sounds.  Every time she says it, I immediately think of the free boost you get with a Jamba Juice.  They have, I dunno, energy boosts and whey protein boosts and maybe a femme boost of some sort.  It’s probably just extra sugar or something, but it’s a catchy gimmick and I really do love me some smoothie drinks!  And, you know, it’s happy sounding.  

Sadly, a boost, in radiation terms, is something entirely different.  So far, my treatment has been going after my entire breast and all its tissue – hence the armpit burning.  It’s a general treatment, designed to protect that breast from any cancer re-occurrences.  What they call a boost is really when they go after the site of the original cancer.  If it wasn’t happening to me, it would be fascinating.
They have these really cool 3-D scans of my body, specifically defining my lumpectomy bed (the cancer that was removed, along with the surrounding tissue).  It’s a bit of a goofy shape, and it’s almost directly behind my nipple.  So they traced the outline of that tissue from the scans, and then cut the shape out of a metal plate.  That plate is attached to the end of this full-on NASA-lookin’ zoom ray thingie that gets attached to the normal radiation machine.  (The plate will be melted down when I finish my treatment, and then reused.  I love the sustainable approach to this process, but am also a bit bummed – I kinda want to keep is as a fucked-up souvenir.)  Of course I’m simplifying all of this, but the point is that it’s brilliant and crazy as hell, and it looks straight out of an original Star Trek episode, maybe something that threatens to vaporize Spok.

The point of all of this is to zero in on that lumpectomy bed and aim all the radiation at the original point of my cancer, to make sure any remaining malignancy is zapped in to oblivion and prevent anything else from growing there.  Needless to say, I’m not looking forward to this change; it’s my understanding that I’ll be getting the same dose of radiation I’ve been getting all along, but all of it will be concentrated on that one small area…which means that one small area will be getting all the concentrated damage.  It’s not a pretty picture.  

At least Carle did her part to make a pretty picture from it, though.  She needed to make a few marks on my breast with a marker while they were measuring for the boost.  When I changed back in to my clothes after treatment, I realized that somewhere in that process, she drew me a smiley face. I really do love that girl.  

So, I’m taking tomorrow off from radiation.  And because of the Labor Day holiday, that means I’ll have 4 days off before my next treatment.  I’m partially relieved, but also partially disappointed.  I’m really ready for this phase of my treatment to be over, and part of me wants to just get the damage, suck it up, and then get to the business of healing already.  I hate prolonging it – it’s not like I get to skip tomorrow’s treatment, just tack on an extra day to the end.  I’ve never been a procrastinator, and I feel like that’s what I’m turning in to.

But there’s something to be said for just taking some time to breathe.  My momma used to let me skip school once in a while, provided I wouldn’t miss a test, to take what she called “mental health days”: she said it was important to take a day now and then to just relax and hang out.  She used to call in to school for me when I was ill and needed to stay home, and she never thought there was any difference between calling in for me because I just, you know, wanted a little break.  So I’m thinking of tomorrow as a mental health day, a day to try to breathe and sleep and rest and not have to leave the house or even get dressed if I don’t want to.  I’m giving myself permission to cuddle with my kitties and play guitar if I have the energy, or just stare at the beautiful flowers Kara keeps bringing me if I don’t.  

After all, it’s not like that radiation table won’t be waiting for me when I get back.


I am just

Wednesday, August 27, 2014


The “Words of Inspiration” white board in the radiation waiting room has been a bit sparse lately.  But then this appeared:

 Of course, I immediately thought of that terrifying and bizarre Michael Jackson video, in which he and Lisa Marie Presley canoodle around naked and try to pretend they have ever had sex.  It’s weird and disturbing and unsettling in the extreme.

Which is, not coincidentally, how I felt reading that message on the whiteboard.  Because as much as I might like to pretend it is somehow otherwise, and as much as my support people tell me, the fact is that when it comes to treating and fighting my cancer, I actually am alone.  I mean, it can’t be any other way: I’m the only person who lives in my body, so of course I’m alone in it.  Of course.  When I lie on that treatment bed every day and Carle leaves the room to start the radiation, she closes a door behind her.  And I’m talking a DOOR.  That thing has got to be at least 6 inches thick, and it ain’t plywood.  It’s huge and metal and there’s a radioactive sign on it, warning everybody else to stay out.  Of course I’m alone.

And that’s okay.  In fact, I suspect it’s the only way anybody ever gets through any sort of physical or mental trauma: by harnessing all the inner strength we have and trusting that it’s going to see us through it.  We can rely on other people to a certain extent, of course, and we should.  But at the end of the day, it’s the inner will that separates people who make it to the other side from the people who don’t.

I’ve been thinking about it more and more lately, as the end of my radiation creeps up.   I feel all of the expected stuff: relief, pending freedom, a bit of trepidation over what comes next in my overall cancer treatment, etc.  But I also feel something a bit unexpected: fear.  Not of re-occurrences (although I do, of course, fear that), but of the space that’s going to be left in my life.  I have spent the past 4 months focusing on nothing but my cancer.  I have read studies on-line, talked to survivors, read books, made notebooks of questions, shopped for the right treatment team, told friends, cried, prayed to my momma to help me make the right choices, bought burn creams and canned pumpkin, answered more inappropriately personal questions than one should ever be expected to reasonably answer, and displayed my rack to approximately half of Multnomah county.  I have been fully consumed with my cancer, because I haven’t really had a choice.

And now that the day-to-day focus is about to shift, I am a bit nervous about what is left.  I had this feeling once before, when I started treatment for an eating disorder.  I had been actively bulimic for 19 years at that point, and my then-therapist finally told me that if I purged even one more time, she was going to consider it a suicide attempt and would treat it as such, including petitioning to have me committed if necessary.  Needless to say, I got my ass into a treatment center, STAT.    I wanted, more than anything, to end this horrifying behavior, and to be healthy and sane.  I didn’t want to be bulimic anymore.  But it was who I was at that point.  I had started when I was 11 and I got treatment at 30; that disease had defined me almost my entire life.  So as much as I wanted it gone from my life, I had no idea who I would be without it. I had no idea who I was, as a person, without an eating disorder to identify with and cling to when the shit hit the fan.  There was a fairly dramatic game of mental tug-of-war going on there.

This situation now is obviously different in several pretty key ways. I know that.  But the feeling is the same: what’s left?  What do I do now?  Do I just go back to my previous plans to expand my business, trusting that I have a future that is secure enough to plan for, and dive in head first?  Will I become one of those people who is always waiting for the other shoe to drop, because is legitimately could, and will I let that prevent me from fully living?  What am I going to do with all of the time I will have once I no longer need to take 3-hour naps twice a day and sleep 10 hours every night?  And what’s going to happen when I’m still dealing with all the emotional fall-out of my radiation treatment and everybody else thinks it’s “done?”

I’m sure all these questions will answer themselves once the time comes.  But for now, that fear of emptiness is very real.  Very stupid, perhaps, but very real nonetheless.  I mean, it’s not like I want to continue radiation treatment, for fuck’s sake.  I’m so ready to be done.  But as long as I’m behind that door, I’m not the one making the call.  I’m just doing what my oncologist tells me to do, and in some ways, I’m not longer responsible for those choices: once I decided to have radiation, I put the responsibility to keep me safe in Alice’s hands.

 I’m just afraid my hands aren’t ready to have it back.  

22 of 30.

Tuesday, August 26, 2014


Something really fucked up happened after my 21st radiation treatment.

The treatment itself was a bit unusual, in that I went in in the morning, instead of my normal afternoon appointment.  When I realized I had another medical appointment that would create a conflict, I called Carle, who promptly rolled out the red carpet and made me feel like it was no inconvenience at all for me to change her schedule at the last minute.  That girl is just a doll.

She also played me Michael Jackson’s “Don’t Stop ‘Til You Get Enough,” which struck me as oddly appropriate for radiation treatment.

The thing is, I’ve been really, really tired lately.  There have been several days when all I could do was sleep.  And it’s a different type of feeling.  I mean, the only words I know for it are tired, exhausted, wiped out, etc.  But none of those are quite right.  Believe me, I’ve experienced some dog, bone tired before.  I mean, I spent over 5 years teaching full-time at George Mason University while also doing a PhD full-time.  So I know what it feels like to barely keep myself upright from the fatigue.

But this kind of tired is something I have never experienced before.  I used to have something I called “breast bone tired.”  It was this particular kind of feeling I got, usually right before I fell asleep.  I would feel something in my breast bone, a settling, a shift, something – who knows.  But when I felt it, I knew I was about to drift off to sleep.  It was comforting, particularly for a life-long insomniac.  

Lately, I’m starting to feel breast bone tired in the middle of the day, while driving, while working, once at the grocery store.  It’s my body’s unmistakable sign that it simply must have sleep.  It’s startling, when it happens at moments when I obviously can’t just grab a corner and a blanket and take an hour.  Or two.  Or three, as my “naps” have been these days.  I have had to cancel a whole mess of client sessions because of this overwhelming need to sleep, something that is so fundamentally unsettling that I can’t adequately give it words: I know that my clients trust me to show up and help see them through a huge commitment they have made, and when I can’t do that, when I have to take care of myself instead of taking care of them, it feels like absolute shit.  I feel like a failure, like I am letting them down. I know that’s bullshit – I do.  And I know they want me to practice good self-care.  But it still feels that way.

So I wanted to see how having my treatment earlier in the day would affect my energy levels, if at all.  Of course it did.  By 3.00 in the afternoon, I actually wondered if I needed to pull the car over to the side of a quiet road and take a nap; I was driving home from one of my nurse practitioners’ offices, and seriously didn’t know if I could make it without falling asleep.  I think the drive is about 8 miles.  That’s it.  And I was struggling so hard to keep it together.  I did all the things I was taught as a teenager, stuff to help fight fatigue while driving: I cranked up the radio (which didn’t help, since I’ve had a headache for 5 days now), turned the AC on full-blast, rolled down all the windows…and said a quiet little prayer.  I made it home in just enough time to fully collapse on my couch.

Later, I was thinking about a woman I just met.  She did what so many people do when they find out I’m in treatment for breast cancer: they tell me their personal stories of people they know who have had it.  It’s sad, to realize that almost everybody has a personal breast cancer story.  But it’s also sad that people seem to think I will be in any way comforted by the ones that don’t end well.  This story was about a woman who was diagnosed over 20 years ago, went through chemo and radiation, and then had a second occurrence about 7 years ago.  It’s been so horrible for her that she decided not to have the chemo anymore, and she is just, as I was told, “waiting.”  As in, waiting to die.  “Clocking time,” as my great-grandmother called it.  “She has good days and bad days.  The bad days are… you know.”  No, actually, I don’t know.  And I don’t want to know.  And I also don’t want to spend the next week trying to figure it out!  I don’t understand this type of “help.”

All this was running through my head while I was lying on the bed with my breast covered in pumpkin.  My burning is definitely getting more pronounced, and the heat from my skin was melting the pumpkin so that it was dripping off me in every direction.  I tried to maintain a sense of humor about it, appreciate the absurdity of the fact that my boob was melting canned pumpkin while I watched House of Cards on Netflix.  But I couldn’t get that story out of my mind.  And I was so tired, and my eyes were burning, and my head was pounding, and my breast bone was screaming at me that it was time.  

After the remaining pumpkin was scraped off my breast, I went to the bathroom to drag myself in to the shower.  When I looked in the mirror, I was horrified.  I didn’t look tired, or exhausted, or even in pain.  I looked positively haggard.  My eyes looked dark and sunken, my skin looked dry and fleshy, and I just looked like I was…waiting.  It was the first time I have looked at myself and actually thought I look like a woman with breast cancer.   

I just stood there, staring into the mirror, wondering what in the holy hell happened to me.  I am a really active person.  I love to exercise and go hiking and tell stories and write music and troll second-hand stores and play with my kitties and stand under waterfalls and go bowling and cheer on my Green Bay Packers and getting cancer was positively not a part of my plan.  

And there I was, in the mirror.  Just one more woman with a breast cancer story.  And I’ll be damned if I didn’t look the part.

But 21 of 30 is done.  9 more to go.  Single digits.  I will sure as hell miss Carle.  But I won’t miss this.

Sunday, August 24, 2014


Carle has been playing Jens Lekman for me the past few days, because he’s her secret boyfriend.  And when I say “secret,” I mean that everybody knows about it except Jens himself.  He’s one of Our People,  Scandinavian, and a fairly equal cross between Abba, Belle and Sebastian, and Neil Diamond. I’m pretty sure I love him.  He’s dreamy-voiced and sweet and non-threatening, and perfect to listen to during treatment.  

I’m also sure I love Carle’s canned pumpkin home remedy.  I have been applying it every day and it’s making an enormous difference.  (Allow me to clarify:  I’ve been using canned pumpkin, but not pumpkin pie filling. I have idea what the additional spices and sugar added to the pie filling would do to burned skin, so if you’re thinking of trying this yourself, be sure to read the label carefully.)  While it feels (and looks!) really awkward and surreal in the moment, the before and after photos I’ve been taking are really dramatic and impressive.  It doesn’t seem like the relief lasts more than about a day so far, but I intend to keep using it every day, especially over the weekends, to see if it can help me get through my last two weeks without some of the peeling and blistering that has been known to happen to radiation patients.  

I’ve also started using silvadene, a prescription burn cream, particularly on my nipple. I reached a point of being absolutely certain that I could have turned my nipple into some sort of weapon with which to shank people in the proverbial laundry room, and it felt precariously close to spontaneously detaching itself from my body.  I have no desire to be a martyr about this, so I filled the scrip and started applying it right away.  So far, this is the regimen that is working:  pumpkin on my entire breast once a day for 45 minutes – 1 hour; silvadene on my nipple and areola; aloe throughout the day, as often as I think of it; and calendula cream on my armpit.  That last one sounds a bit weird, I know.  But breast tissue goes way up in to the pits, so that area is fair game for radiation.  Since it is not only being burned but also constantly rubbing against itself, it actually hurts more than anything else does right now.  Add to that the fact that it irritates the skin too much to shave anymore, and I’m doubling-down and pulling in the big guns.   

On a sad note, Carle had to take down my Vincent photo.  It wasn’t really Vince who was the problem but me: my name is distinctive, my picture was there… damn HIPPA regulations!  I was actually recognized in the waiting room by another radiation patient. I thought it was glorious, but still.  Now I will just have to daydream Vince’s dreamy face while listening to the dreamy-voiced Jens Lekman.

That’s all the nuts and bolts stuff.

The more complicated stuff is the new sense of fear with which I’m grappling.  I’m 2/3 done with my treatment, which is, of course, a cause for celebration.  But it also means that in just over 2 weeks, most of my friends will assume, not without reason, that it’s “over.”   

But Dawn, oncology social worker extraordinaire, made a point of telling me that for some women, the end of treatment is really just the start of the emotional process of really grappling with what has happened.  When the day-to-day reality of just getting through is finally finished, that’s when people can collapse from the deferred emotional and mental weight of what they have been subjected to, and everything it means.  

I’m not trying to future trip.  I’m not looking for problems here.  But I think it’s important to prepare myself as much as possible, to start thinking about how I can get the support I need around that milestone.  Because the fact of the matter is that the end of this radiation treatment isn’t the end of anything except this radiation treatment.  It’s not the end of the fatigue or the discolored skin or the darkened freckles or the physical tenderness; that will take two weeks to two years to fully go back to normal.  But more importantly, it’s not the end of the fear, of re-occurrences or other cancers, or of cancers caused by the radiation itself.  I don’t know what those long-term fears will feel like, how to navigate them on a daily basis, how to incorporate them into my “normal” world.  I don’t yet know how to plan for a future that feels remarkably uncertain.  I don’t yet know how to trust that I have a future beyond the cancer center and my oncologists’ offices.  I don’t know any of this yet, and I’m afraid that on 08 September, my last day of treatment, I’ll be alone with it all.  It feels heavy and uphill already.

But 20 of 30 is in the books.  2/3 done.  2/3 survived. And that's not nothin'.