9/30

Carle threatened me today.  I think she’s feeling a bit on-the-spot because Kevin gave me not one, but two pieces of candy, and she suddenly realized just how precarious her spot as my favorite radiation therapist actually is.  So she threatened me with power ballads.  

Carle is, of course, responsible for the previously discussed Air Supply happenings.  We agree that Air Supply was actually a totally righteous and awesome group, in a completely non-ironic way.  We also agree that Celine Dion is a tool of the devil and should never be used as a weapon against others; we decided that Dion is a now a verb, as in, “she Dioned me with that horrible music until my ears bled.”  She promised never to Dion me, nor would she (Mariah) Carey me, which seems only right among civilized people. 

But she assured me she was going to brush the cobwebs off of her music collection and come up with a ballad that would scare, torture, or shock me in some way.  But here’s what Carle, who must be all of maybe 28, doesn’t seem to understand: I was a teenager in the 80’s!  I fear no ballad.  I have sang big-hair power ballads at the top of my lungs, with the windows rolled down of a pickup truck, driving 90mph on unpaved country roads at 3am with half the membership of FFA.  I have belted out Belinda Carlisle and Motley Crue and Tiffany and Styx and Duran Duran and Bonnie Tyler and Journey and Richard Marx… So to Carle, you naïve young’n, I simply say this: Bring It!

Especially because I have been wearing my special Power Necklace™ to every radiation session I’ve had so far.  The Power Necklace™ is probably the very most special physical possession I have, the thing I would save first in the event of a fire, and I really do feel like it protects me from evil and fear and drama and Meatloaf ballads.  It’s like Wonder Woman’s cuffs, only more personal.

My momma gave me the Power Necklace™ when I was 15 years old.  She had been out browsing at a Ben Franklin and happened to see this cheap gold necklace.  It’s a hollow heart, a bit squished…like someone laid it on its side and stepped on it.  A smaller heart, taken from the middle, dangles down from its own chain.  I remember her coming in the front door, all excited and eager and smiling ear to ear, and saying she got me a little something.  She explained that she just had to get it for me, because it reminded her of us:  “Because you are the center of my heart, and you’re never far away from me.”  She said it like it was just a polite observation, something vaguely sweet and relatively routine.  She said it as if it wasn’t something I would remember and cherish for the rest of my life.  She was right about so many things, my momma, but holy shit, did she drop the ball on that one.

So I run to this piece of jewelry whenever something scary or challenging comes up: a job interview, a hard decision to make, a big financial commitment, a difficult conversation…or the strategic burning of my body.  All the stuff I would usually talk with her about.  I wear this necklace to treatment every day to remind myself that while I lie there on that table, for all intents and purposes fully alone, I’m not, actually, alone.  Because my momma gave me all the strength she had, all the wisdom, all the insight, and all the balls.  Because I am still the center of her heart, and we are never far from one another.  Because if she still had a body and a voice, she would hold my hand, look me in the eye, and tell me to suck up whatever musical horror Carle comes up with and get this shit done already.  

So that’s exactly what I’m doing.  Today was 9 of 30.

8/30

There’s a white board in the radiation waiting room, where patients write inspiring or encouraging messages to one another.  There’s a lot of “you got this!” kind of messaging, and sometimes some sort of congratulatory message to someone who has completed treatment.  There’s always a car or truck of some sort – someone in radiation really loves her automobiles.

Today there was also this:

While this figure doesn’t look strong enough to smash much of anything (particularly since I can't figure out how to rotate the picture so this sideways 90lb weakling could at least have a fighting, vertical chance), I decided to take it and run with it.  Because one of my breasts is starting to turn darker than the other one.

I guess I thought it would take longer than this.  I don’t know why I thought that: I started to feel heat from my breast after only 4 treatments, so I don’t know why I’m surprised to realize that my skin is starting to tan.  Maybe it’s because it appears to be the very first tan I’ll have had in my entire life, and I just don’t know what to do with it; I probably feel the way a Floridian would feel if her skin turned green.   

Or maybe it’s just one more sign, one more conclusive sign, that this is real, and no matter how hard I try to laugh it off and make friends with the techs by bringing vegetables from my garden or lipstick my way through it, it’s real.  I try, when I lie on that table, to tell myself stories. I make to-do lists for the day.  I mentally plan my client sessions, write emails, and return phone calls and texts.  I sing to myself, work on new lyrics for songs I hope to write, tap my feet; as long as I don’t shift my torso or my arms, I think it’s okay.  I let my mind wander as much as it can, so that I see as little as possible of this huge and imposing metal eye staring down at me, moving in circles around me, beaming heat and radiation and danger into my body, into my breast, under my skin.   I avoid it as much as I can while it zeros in on me, and I’m trapped.  Radiation feels like having a stalker.

And my breast is getting darker.  To anyone else, I’m sure the change is almost imperceptible.  But every time I take a shower or change clothes or put aloe on my skin, it jumps out at me.  I’m naturally pale.  Like, very pale.   My momma used to say I had “peaches and cream” skin and an ex used to call my complexion “alabaster.”  Those were both sweet and biased assessments from people who loved me.  But let’s be real: when I was in middle school, the kids used to call me “Casper” because I was so white.  So the slightest bit of color on my skin sticks out like a sore thumb.  At least it does to me.  It’s part of why I am so vigilant about sun block; I’m aware that my skin is particularly susceptible to damage.  And silly me, I always thought sun damage was the only kind of skin damage I would need to be worried about.  I never worried about this.  I never worried about this.  But the eye keeps following me, and I’m only 8 sessions in.  

I’m afraid it’s going to smash me before I have a chance to smash anything at all.  Including that impressive and ugly machine.  Including cancer.  Including my fear that I’m going to spend the rest of my life wondering what is growing inside of me that I don’t know about, waiting to take me down when I’m not looking, when I get distracted by something shiny over there, when I think I’m doing everything right, again.  It’s become a contest of wills, a race of sort.  And I’m not sure how fast I can run.

8 of 30.

7/30

So, I learned today that the tattoo that was placed in the center of my chest, which is used to help make sure I’m lined up properly on the radiation table every day, is just shy of the radiation field itself.  Or maybe the field is just shy of the tattoo.  Either way, I know it’s just shy.  Not a bit short, or a bit off-center or even way off base.  “Shy.”

 And the reason I know this is because Carle, clearly the weirdest and most awesome radiation tech I could have ever hoped for, announced it today to Sarah, the other tech in the room.  But she didn’t say it was shy.  She said it was “Shy Ronnie.”  They both clearly knew what they were talking about.  I clearly knew nothing.

Now, I don’t own a TV set, and am admittedly a bit behind the curve when it comes to the stuff The Kids are into these days.  So I politely asked her what in the hell she was talking about.  She explained that Shy Ronnie is a character on SNL these days, and that there was this hilarious skit with Rihanna, etc.  So whenever she has the opportunity, she says it’s Shy Ronnie.  Her boss pointed out that there are official medical records to consider, and she shrugged and said, “yeah, I know.”  I love this crazy B.

On days like today, sessions 7 of 30, radiation feels more like a social event than it does a very serious medical treatment, one with potentially grave long-term consequences.  And I’m so fucking grateful.

6/30

My girlfriend happened to have yesterday off work, so she went with me to my radiation treatment.  She had already met some of my team, but she had never seen the treatment room in action before.  I was comforted by the idea of her going with me, of her being there the moment my treatment was finished.

But there was something more to it than that.  And I couldn’t have anticipated it before it happened.  What I felt, more than the comfort or the reassurance, was a weird sort of pride.

I’m not sure I can explain it.  It wasn’t like I felt proud of the machinery or the room or the enormity of it all; those things have nothing to do with me, so I have no earned pride in any of it.  But I was aware that my chest was puffing up a bit – no pun intended – when she came into the treatment room and exclaimed, “oh, holy shit!”  It was an immediate feeling of validation, for sure.  Like, maybe it wasn’t so crazy of me to be overwhelmed by it all on my first visit, like maybe it wasn’t that out of line for it to be overwhelming still. 

But it wasn’t just the validation.  It was more like, a pride in the fact that I’m doing this.  That I’m getting through it.  That I show up every day, head held high, and I simply get through it.  I leave with my head just as high as it was when I walked in, and that’s a big fucking deal, to not get beaten down by all of the fear and anger and anxiety that shrouds those rooms.  It’s thick, like really good gravy, and it has the potential to stick around even longer.  And that’s appropriate, you know?  What happens there is big deal shit, and it makes sense that it feels that way.

I am managing, so far at least, to define my experience in my own terms.  So far, I manage to use laughter to cut through the gravy, I use information to slice away at the uncertainty, and I use my own determination to make my momma proud of me to still be who I am.  Because the fact is that I’m getting pretty sick and tired of people telling me how strong I am, that I’m “so much stronger than I think.”  I appreciate the sentiment, but the fact is, this isn’t about strength.  It doesn’t take strength to lie on table and have something done.  It doesn’t take strength to do this.   

But I’m figuring out how to make this experience mine.  And I guess I’m proud of that.  I was proud for someone I love to see it happening, in real time, even if it was through a weird little window in a room safe from the radiation.  I was proud that she saw it all, from the machines to the green laser beams that criss-cross the room to the techs themselves, and she knew that all of that was my daily reality.  And I still laugh.  I cry, too.  But I still laugh.  Because that’s what my life is about.  And this experience is just part of it.  And there’s nothing wrong with being proud of how I’m doing it.

I also found out that kissing on a radiation table doesn’t really work.  Just sayin’.

6 of 30 was a piece of cake.

5/30

I had a great conversation today with this lovely woman named Dawn, an oncology social worker who is based in the radiation department.  I found her to be genuine and smart and not afraid to laugh at the hard stuff.  She also pegged me as a bit Type-A right off the bat.  I told her that I have a label maker and I’m not afraid to use it, and she said, “yeah…that sounds about right.”  Not a bad assessment for someone who had known me a total of about 8 minutes.  

Dawn and I discussed resources for women in my position and a little bit about what to expect as the treatment goes forward, but we spent the vast majority of our time together talking about how other people are reacting to my cancer and treatment.  And she wasn’t in the slightest bit surprised by anything I said.  

It seems that I have been spending a rather disproportionate amount of time navigating other people these days, when I need to be spending as much of my energy as possible navigating my own process., and apparently this isn’t uncommon.  It’s not because the people in my world are dicks; quite the contrary, I’m blessed to have a few really lovely, attentive, giving people in my world, people who want to help and want to care for me when I really need the help.  The problem isn’t that I don’t have anyone in my life to support me.  The problem is that they don’t know how to do it.

And that’s just really legit.  I mean, it’s gotta be weird to be in their shoes, to have someone they care about diagnosed with something scary, to not be able to “fix” it, to not know how to best help, what to say or not to say, when to be strong and stoic and when to allow their own fears to come out.  There’s no rule book for this crap.  It’s undoubtedly a feeling of profound impotence, and that’s a very complicated and shitty feeling with which to sit.  And I respect that my friends are doing the very best they can.

The problem is that there seems to be a rather consistent difference between what I actually need in support and what people want to give me in support.  My strong suspicion is that this is the cancer treatment equivalent of a first world problem – I know that.  And I don’t mean to sound ungrateful.  But I don’t need anyone else to:

• Tell me about their uncle/co-worker/mother-in-law/mail carrier’s experience with cancer, which, surprisingly, often times end in death. (How exactly is this supposed to be encouraging?);   

• Insist they know all about radiation side effects, and then proceed to talk about chemotherapy side effects, despite my protestations. (My taste buds aren’t changing, and I’m not going to lose my hair.);

• Try to talk me out of my feelings by pointing out how much worse it could be.  (I’m so completely aware of how blessed I am in my early detection…which doesn’t negate the experience I am still having.)

• Have a hard time making eye contact with me because they keep glancing at my boob, like it’s going to spontaneously erupt in flames or something.   (Seriously.)   

• Look at me with pity in her eyes.

What I need is really rather simple.  Not sexy, not showy, not dramatic at all.  What I need is to have my experience honored and validated.  And that’s as easy as a text every few days asking how things are going.  It’s as easy as an email or a phone call or a fucking passenger pigeon that says, “Hey, I’m thinking about you, and I care, and I’m here.”  That’s it.  Because what’s going on in my body isn’t something that any of my friends or co-workers can fix.   It’s not something they can fully understand.  It’s not something they can anticipate or rectify.  But it’s something they can acknowledge and respect.  It’s something they can listen to when I need to talk.  It’s something they can ask questions about so they can understand it better.  It’s something they can know, just a little tiny bit, by knowing me.

And what I really need is for that support to continue.  My fear is that after a few weeks, when this becomes routine, people will forget that I’m still living this experience.  When people stop checking in, because they inevitably forget, I’m afraid I’m going to feel alone.  And the timing of it sucks, because the effects of radiation are cumulative: the burning and the fatigue will become gradually worse as the treatment moves forward.  So when I will inevitably need the most support and help is when most of the people in my world will have moved on, forgotten it’s still happening, pushed it to the back burners.  And that’s reasonable – this is my experience in my body, and I certainly don’t expect it to be front and center in anyone else’s life.  But I will have no choice but to keep it front and center in mine.  And what will I do with it then?  

 But all is not lost, because Carle the Wonder Tech, who, it turns out, is a sucker for a sappy power ballad, played Air Supply for me today during my treatment.  So there’s that.  And my first week, sessions 5 of 30, are done.