18/30

I have been thinking a lot about self-care lately, and how to really do the things for myself that I need and deserve while going through radiation treatment.  It seems like when it need to make the commitment to myself more than ever, it’s getting harder and harder to get it done.

After my 18^th radiation treatment, I went to get my hair done.  I have a lovely friend and hairstylist who lets me come to her house so she can be my Kitchen Beautician, thereby saving me her salon fee.  It’s always a treat and feel refreshed and renewed when I’m done.  And, and this is not of small import, pretty.

I realize that sounds trivial and silly. I’m fighting to prevent cancer from reoccurring in my body – you’d think the last thing I would be concerned about is my hair.  

The thing is, I’m a self-identified High Femme.  A big part of how I understand myself has to do with a heightened sense of traditional femininity.  It’s important to me to get my hair done.  It’s important to get pedicures and have my eyebrows waxed and maybe even get the occasional facial.  Those things are a big deal to me on an on-going basis.

And right now, it seems more important than ever.  Because the part of my body being treated is my breast, the number one outward marker of femininity.  It’s already been surgically altered and will never look the same again.  Now it’s being systematically burned.  It doesn’t make me less of a woman, of course. It doesn’t even make me less of a lady.  But it makes me feel less pretty.  There – I said it.  It makes me feel less pretty.  I hate that I feel that way – I don’t want it to have that kind of hold on me.  I don’t want to buy in to all the bullshit conventional standards of beauty.  But I can’t help how I feel.  And right now, I just don’t feel pretty.

I also feel exhausted.  It’s getting harder and harder for me to get through a normal day, and I have found myself needing to cancel some evening sessions with clients.  I have really tortured myself over those decisions; I value my clients so highly, really respect how difficult the work we do together is, and feel humbled and honored that they choose to do it with me.  And I know they depend on me to show up for them.  So it’s been its own kind of mental anguish for me to have to pick up the phone and tell them that I’m too tired, that I have to stay home and sleep.  I feel like a failure.  It’s natural, the fatigue I’m feeling, and I’m told it will only get worse before it gets better.  It’s part of the treatment.  But I still feel like a failure.

So how do I take care of myself in the midst of all of this?  Sitting in my friend’s kitchen, getting my hair done, was a treat.  Still, I can’t deny that it was all I could do to hold my head up high enough for her to do her job; I found myself wishing there was some way I could lie down while she colored my hair.  I want, more than just about anything, to walk in to New Identities, my favorite nail salon, and get one of their amazing pedicures.  But I have canceled enough client sessions that I can no longer afford that luxury.  And forget about a massage.

I feel like I’m in God’s Little Acre: east of the rock, and west of the hard place.  I know the things that make me feel cared for and pampered, that reinforce my femininity and beauty, that allow me to relax and feel a bit safer in my skin.  But I don’t currently have access to those things.  I am forever complimenting my clients for prioritizing their own self-care.  And I pride myself on modeling that, be it in a gym or an acupuncturist’s studio.  And right now, I’m too tired and too financially unstable to do much of any of it.

I just feel stuck right now.  And like the fatigue of radiation treatment, I suspect it will get worse before it gets better.

But 18 of 30 treatments are done.  And that’s something.

17/30

Tonight I did something that I can honestly say I never thought I would do: I spread pumpkin pie filling all over my breast.

Let me explain.

My breast is definitely turning color now.  It’s noticeably pink, and the freckles and moles are getting much darker than they were before.  In fact, I think I’m developing freckles that were never there in the first place.  For a couple of days now, I thought I could see a pretty clear line on my skin, an obvious treatment square…but I also wondered if I was being paranoid and looking for it too hard. 

 

But I saw an oncologist on Monday (Alice is on vacation this week, so I met a new one…whose name escapes me), and she took one look at my breast and said, “yeah, it’s happening.”  So I have independent confirmation.

I am also getting virtual non-stop confirmation from my nipple, which feels like it could cut stone and may actually fall off at any given moment.

The oncologist talked to me about a prescription cream that I could try, and antibiotic that is also soothing.  I have no interest in being a hero around this, so I asked her to call it in for me.

But in the meantime, I spoke about it today with Carle.  She gave me yet more confirmation that the changes are noticeable, and made it clear that now is when it starts to get hard.  We talked about the cream, but then she said, “You know, I don’t know how much of a hippie you are, but…”

My ears always perk up when people start a sentence like that.  I’m from Madison, Wisconsin, a town filled with bed-wetting liberals.  And I live in Portland, Oregon, which is basically Madison West.  I’m not at all a hippe (I bathe super regularly, don’t like patchouli, have never been to Coachella, etc), but I’m absolutely interested in avoiding any unnecessary support of the pharmaceutical industry.  So I knew I was going to be interested in whatever Carle had to say.

I can’t say I could have predicted that she would recommend slathering my breast with pumpkin pie filling.

But she had a patient who did it, and Carle said she’s has never seen a patient’s skin tolerate the treatment so well.  Now, how this patient decided to try this treatment is 100% beyond my ability to imagine.  But I trust Carle, and pumpkin pie filling is certainly an inexpensive experiment…

So tonight, I opened a can of Libby’s and grabbed a spatula and went to work.  It smelled weird, to be sure, but I can’t deny the immediate soothing effect on my skin.  I ended up sitting there with that stuff on my skin for about an hour.  I wasn’t quite sure how to even get it off, so I ended up scooping up most of it with a paper towel, and then soaking off the crusty bits with a wet wash cloth.    

Obviously, I showered immediately after.  

And here’s the insane part: when I looked at my breast after my shower, I could see a difference!  I accidentally didn’t put the pumpkin as high up as my burn marks go, and I’ll be damned if it isn’t clear where I stopped!  This is the world's most bizarre farmer's tan.

This is the weirdest shit ever.  But it’s going to be part of my nightly routine from now on.

17 of 30, weirdly in the books!

16/30

March 2, 2011 was the very worst day of my life.  That morning, at 4.03am, my momma died in my arms.  She was a snarky, hilarious, affectionate, outrageous lady who cursed like a sailor, loved Jeopardy! to an absurd degree, knew the entire 53-man roster of the Green Bay Packers (plus most of the coaching staff), always crossed her legs when sitting, and who single-handedly taught me that absolute, unconditional “you can’t possibly fuck up enough that I won’t still think the stars shine out of your eyes” love exists in the world.  She was my hero and my champion and my best friend, and her death positively darkened the sky.

She had been diagnosed with stage 4 lung cancer 14 months before she died.  Her approach to dying was one of quick-fire humor; for all her love for me, my sister, and her grandson, my momma was ready to go.  My attitude, on the other hand, was one of pending doom.  If I had been told that North Korea had just launched a nuclear strike against the US and the bombs would start hitting within the hour, I wouldn’t have been anywhere near as distraught as knowing I was going to lose my lifelong partner in crime.  

Her death was the biggest body blow of my life.  I felt the wind get knocked out of me when my hand was no longer rising and falling on her chest.  I felt my ears ring from my own screams.  It was the ultimate “nothing will ever be the same” moment.

So of course I knew I would have to rely heavily on my friends.  I hadn’t been shy about telling people that my momma was ill, that she was dying.  I needed and received a good deal of support as I started my grieving process even as she was still alive.  My fear was insurmountable, and I needed strong arms to help me stand through it.  I trusted and assumed that all of my friends, close or distant, would rally around me, come out of the woodwork, and really show up, in simple and profound ways, when I needed the friendship and support more than I ever had in my entire life.

Holy shit, was I wrong about that!

Turns out people don’t like grief.  Go figure.  But it also turns out that lots of people are so uncomfortable around the process of grief that they run to the farthest, darkest corners of the earth to avoid it.  What that meant for me is that many people who I considered among my closest friends just simply disappeared when my momma died.  

I began to realize that people are afraid to be around those who are grieving, because it reminds them of their own fears of losing the people they love.  And I understood that.  But I also didn’t care.  I needed support from the people who understood what my momma meant to me, and so many of those people bailed because it was hard for them.  I didn’t care that it was hard for them, because I guarantee it was harder for me.

I saw it as a real eye-opening experience.  And I started culling my list of “friends” with a hatchet.  It was both simple and methodical: I literally made a list of people I considered my friends and crossed out the ones who disappeared when my momma died.  I never spoke to those people again, other than to tell them why.  I made it clear that they had abandoned me when I needed them because they were selfish cowards. I didn’t care that it sounded melodramatic, because it was also true. I simply wrote them out of my life.

I realize this all sounds like irrelevant history.  But the thing is, it’s happening again.

Most of my friends are women.  That means that most of my friends are at risk for developing breast cancer.  That means they are afraid and uncomfortable by my situation.  And thus, history is repeating itself.  

When I first came out as having been diagnosed with DCIS, I got a flood of “I’m here for you, and if you need anything, let me know” texts and email and phone calls.  And then, virtually overnight, the flood turned into a trickle.  A few amazing people I am super blessed to have in my world have really stepped up to the plate, offering specific help, checking in on me regularly, asking how I’m feeling and if I need a Fred Meyer run, sending cards in the mail, etc.  It’s made me feel loved and supported, but most of all, not forgotten; 6 weeks is a long time to stay on anyone’s daily radar, and I know it’s the exceptional people who realize this is an on-going process for me and that it changes every day.  Those people, the ones who remember and act, are a gift.

But just like when my momma died, a few of the people I would have expected to be front and center have basically pulled Houdini acts on me.  

I could go in to the details, the hollow gestures, the offers that aren’t followed up on, the big and pretty words that are just that… but the point is, I think I may need to get my hatchet back out.  Because while breast cancer is nowhere near as devastating as losing my momma was, the stage is set in the exact same way: I’m in emotional need, people are afraid of what that need could one day look like for them, so they are hiding from it.  

At the risk of sounding simplistic or crude, fuck that.  And fuck them.

Because my girlfriend Kara, who is female and therefore has breasts, has shown up emotionally and physically and gone way above and beyond the call of duty.  My friend Liz, who is female and therefore has breasts, has gone with me to the hospital and met me for coffee so I could talk and texted to check in with me several times a week.  My friend Alice, who is female and therefore has breasts, has let me speak honestly about my fears and hasn’t flinched away even once.  My friend Angela, who is female and therefore has breasts, has given me more support from 3000 miles away than some friends who live within walking distance.  My clients, almost all female, almost all having breasts, have been understanding and sweet and amazing.  And don't even get me started on my sister or my therapist!

The thing is, some people manage to show up.  And I don’t know what I would do without those people, their ability to set aside their own fears in order to be a good friend and offer what I so desperately need.  As for the people who don’t… it’s not like I will never speak with them again. It’s not like I am (necessarily) going to write them out of my life.  But they have shown themselves for who they really are.  And I see it.  I’ve had practice at this stuff now, and I don’t need any more fair weather friends.  Because I’m in the middle of a shit storm, and I’m reaching for life ropes every day.  I am learning who I can actually count on, and who I can’t.  It’s always a terribly sad process.  But it’s an important and honest one.

I’m over half-way done.  16 of 30, complete with “We Are the World,” is done.

15/30

There have been a few times in my life when I didn’t know I was playing the lottery, yet I won:  It happened when I was born to my particular mother, who turned out to be a lifelong two-for-one momma/ best friend combo; it happened again each time I played the kitty lotto and ended up with the sweetest and most badass balls of fluff any crazy cat lady could ever hope for; and it happened when I started radiation treatment and was assigned to Carle.

Carle (the self-proclaimed “Norwegian Ninja”) is, most importantly, super proficient at her job – she knows her shit upside down and inside out, to the point that she has trainees studying under her.  She knows all the measurements and angles and fancy terminology, she knows how to line me up on the table exactly right, and she knows when I’m not on the table exactly right.  I have total trust in her ability to get me zapped in the right place, in the right amount, for the right duration.  That’s never in question, ever.

But there’s something else going on there.  And I just today figured out that I think Carle and I see ourselves and our jobs in the same way.

In my work as a personal trainer, it’s my job to teach people how to exercise. I show them new ways to lift weights, how to strengthen their cores, how to negotiate body weight intervals to get maximum cardio benefit, etc.  And because the overwhelming majority of my clients are either out of shape, menopausal or post-menopausal, and/or very large, there’s a huge intimidation factor.  Gyms can be really scary places, filled with people who all seem to belong there and treat it with so much ease and poise that it’s tempting to assume they have always been in tip-top shape… and easy to assume they will automatically judge those who aren’t.

So a big part of my job is being a really effective wing-man to my clients.  Yes, I’m there to guide them through the proper form of a prisoner squat.  But more importantly, I’m there to be there.  I’m there to talk to them, and to listen to them.  I’m there to believe them when they say something doesn’t feel right, and to offer alternatives.  I’m there to respect them and push them in tiny and safe increments and to validate their experiences, past and present, and help them walk baby steps toward the futures they see for themselves.  In other words, my knowledge of anatomy is helpful.  But all trainers have a certain knowledge of anatomy.  It’s my ability to relate to people that I find far, far more helpful.  It’s my ability to help people feel safe and comfortable in an otherwise foreign space that makes me valuable to my clients and that sets me apart from other trainers.  And that’s the part that – unlike anatomy and physiology -- can’t be taught.  

I think Carle is the same way.  She knows her profession’s version of A&P, and she knows it really well.  But what’s more important to me is that she knows how to put me at ease in a room that is designed to do terrifying and dangerous things to my body.  She knows how to make me crack up in fits of laughter while she and Sara discuss if my radiation tattoo is lined up appropriately.  She refers to breasts as “cans.”

Carle and Sara (sidekick extraordinaire, a pretty righteous babe in her own right) not only let me bring in a picture of my tv boyfriend to put on the ceiling, but they then added a speech balloon to his face which reads, “Hey Lily-Rygh, you’re looking real good. (Wink)”  When I first saw that, I damn near rolled off the radiation table in fits of laughter.  Of course I screwed up all their work in getting me properly lined up, but Carle assured me they were more than happy to do it again if it meant they could get a reaction like that.  I was absolutely tickled, but more than that, I was really touched.  

I don’t know how many patients they see on any given day, but it has to be at least 20.  That means there’s at least 20 of me to them, but only one set of them to me.  So of course they are a big deal to me.  But they treat me like I am also a big deal to them.  They take so much of the fear out of that room, Carle and Sara and Barb and Kevin and the other radiation therapists I’ve met, and they make it entirely palatable.  Something that is fundamentally counter-intuitive and scary and fully bizarre, and they make it feel almost normal, and more often than not, just plain safe.  

I think I understand now the looks I often see on my clients’ faces after a hard workout.  They look perplexed but pleased, and say, “That was actually…FUN!”  They look like they don’t fully recognize the words coming out of their own mouths, like being in a gym is supposed to be torture and when we manage to turn it into a good time, they feel guilty or like maybe they didn’t do it “right.”  I understand that look now, because I feel the same way about radiation.  I have the most amazing treatment team, and they make me feel sometimes like I’m having more fun than I’m supposed to have during such a serious medical procedure.  I’ve never been so pleased to be so perplexed.

Today when I saw what they had done to the ceiling… They added a picture of ME next to the picture of Vincent.  And they put lipstick on us both, like we had been kissing.  Once again I cracked up – of course.  But more than anything, I felt so fucking grateful.  This experience could have been so serious and terrifying and mind-numbing and mean.  Instead, I feel like I’m making new friends with people I’m not even cool enough to know.  And they are people who understand that their jobs are not just about technical proficiency.  Their jobs, fundamentally, are about being human beings.  And being real with another person who is vulnerable and scared and looking to them to set the tone.  And all of them, Carle on down, do it extraordinarily well. 

And it makes me think that if I’m actually this lucky, maybe I should try to play the lottery for real!

15 of 30, halfway, DONE.  Done, and so grateful.