19/30

Carle asked me today if I wanted a little “spirit boost.”   Of course I said yes, because Carle is just goofy enough that I assumed she was about to do some sort of cheerleading routine in the hallway.  “We got spirit, yes we do, we got spirit… how ‘bout YOU!”

It wasn’t quite like that, though.

Instead, she told me that she showed one of my previous blog posts to a friend of hers.  Her friend is also in her early 40’s, and has had a double mastectomy.  Carle showed her my 16^th blog post, which was essentially about feeling abandoned by many of my friends during my treatment, feeling like people run for the hills when stuff gets hard, which is, coincidentally, when they are needed the most.  And Carle’s friend said that the exact same thing happened to her when she was diagnosed with her cancer:  lots of sympathetic looks, lots of “if there’s anything I can do…” comments, lots of disappearing acts.  Her friend had wondered if she was just being a bitch when she started cutting people out of her life for bailing out on her, and for becoming extremely picky about what she does and with whom.  She said reading my blog help her feel like maybe she hadn’t actually blown her experience out of proportion after all, like maybe this actually happens.

And I felt the same way, getting that feedback via Carle.  I’m certainly not glad that anyone else has had this same experience, let alone any friend of Carle’s.  (Since water seeks its own level, I trust that all of Carle’s friends are top shelf people.)  But there’s something normalizing about it, something leveling.  There’s always a comfort in having your own experience mirrored back to you, even if it’s a crappy experience. It makes you feel less insane.  At least it makes me feel that way.

And I felt better knowing that I wasn’t the only one who took action as a result of feeling betrayed.  Carle’s friend is very particular about her social life now, and is very open about why.  She went through a terrifying, very serious medical ordeal, and that must have put things in perspective for her in a way they almost couldn’t have been before.  It makes sense that she would choose to honor the people who stood by her by sharing her time and energy with them now, while refusing it to the people who weren’t supportive or honest.

And that is what I’m doing already.

The fact is that I’m going through a mourning experience.  I’m so incredibly grateful that my cancer was diagnosed so early, that it was caught at as DCIS instead of after it had become invasive.  I’m aware, every day, that I have been spared chemotherapy, and that there’s no need for talks of mastectomy.  I have never once lost sight of that – I’m so much luckier than Carle’s friend and hundreds of thousands of other women.

And, that said, this is experience is still this experience.  It’s still been terrifying and eye-opening and a real “Come to Jesus” moment for me.  I’m mourning the sense of empowerment I used to feel, the idea that if I eat right and exercise hard and don’t smoke or drink or do drugs, I can protect myself from disease.  I have been brought face to face with the reality that sometimes, no matter what you do and no matter how hard you try, shit still happens.   

That’s a tough grieving process, in a culture that has no idea how to grieve.  I sometimes envy more emotionally open cultures, the ones in which grieving is public and extreme and honest, where women wail in the streets and men pound their fists in the dirt and they scream for what they have lost.  Here, we mourn by closing the drapes and apologizing for crying and doing just about anything to avoid making a scene, while our friends drop a casserole on the front porch and maybe send  a card.  Excuse me if I think maybe we’re missing the boat a bit.  

In the end, it doesn’t matter if my friends see this experience for what it is.  It doesn’t matter if they show up and if they support me.  What really matters, at the end of the day, is how I support myself, and how I remember and react to what is happening now.  Charles R. Swindoll’s famous quote comes to mind:  “Life is 10% what happens to you and 90% how you react to it.”  I used to think that quote’s most useful application was getting through traffic jams mentally unscathed.  But it has a whole different importance to me now.

I’m grateful for Carle’s spirit boost today, even though its lack of pom pons was conspicuous, and it wasn’t your normal pick-me-up.  It reassured me that I’m seeing what’s in front of me, that I’m reading the signs correctly, and that my feelings are rational and appropriate and warranted..  I just wish they weren’t.

But tomorrow I will be 2/3 done with my treatment.  Today was session 19 of 30.  And I’m so grateful.

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.