Friday, September 12, 2014

30/30



I had my last radiation treatment on Tuesday afternoon.  It’s Friday morning, and I’m just now sitting down to write this post.  When I got home from that last day at the hospital, I wanted to immediately start writing.  But then I realized that I had no idea what to say.  I mean, I had so much to say, that I didn’t know where to start.  I still don’t.  But it’s Friday morning, so I figured it was time to try.

Tuesday was an Event.  I was giddy about it, eager all morning long, felt excited like a first date for my appointment.  I had everything planned out, how I was going to bring my gratitude and spirit into that last session: I made cupcakes with yellow frosting and “GO, PACK, GO!” in green letters; I wore my Green Bay wrist band; I brought Carle a balloon and a card, but also a bouquet of yellow and white flowers wrapped in green paper; and most importantly, I brought out the big guns.  I. Wore. My. Cheesehead.  In other words, I was not fucking around.


When Carle came to get me from the waiting room, the look on her frozen face was positively priceless.  She looked overwhelmed by the ridiculous picture I’m certain I presented, wearing a cheesehead and a hospital gown, flowers and cupcakes at my side.  I wish it could have been a hidden camera moment.  As it was, I’m sure the guy on the couch next to me, who was just starting his treatment cycle, wondered what this radiation business would do to his sanity.  He just looked at me, unblinking and dry, and said, “The hat’s a nice touch.”  I think he’ll be fine.

Once Carle and I composed ourselves, she started walking me back to the radiation room.  We turned a corner, and I saw something that it took me a few seconds to understand.  There’s a room off to the side, and from the doorway protruded this arm, holding an absolutely gorgeous bouquet of flowers, and a sign that read, “I would throw my pie for you, Lily-Rygh." 


(Yes, I realize my name isn't technically on the sign.  But whenever I try to explain my name to new people, I say to think of Lily like a flower, and Rygh like a truck.  Flower truck.  Hence the pickup truck in towing a flower.  Hence, my name.)

Those of you who watch Orange is the New Black understand the significance of this sign.  Crazy Eyes, in her bid to make a prison wife out of her Dandelion, throws a piece of cherry pie at someone she perceives as a threat.  When Piper/Dandelion tells her that while she appreciates her support, she is not, actually, her wife, Crazy Eyes responds by simply exclaiming, “I threw my pie for you!”  It’s as though it’s a done deal. I mean, once a woman throws a pie for you, it’s all in the bag:  marriage is a sure thing.

Kara and I have been watching Orange together, often while my breast is covered in canned pumpkin, and like all fans of the show, we toss that line around in conversation liberally.  So it should come as no surprise that it was Kara’s arm holding that sign.  She surprised me and took the afternoon off to meet me there, coordinating it all with Carle.  I damn near started crying when she stepped out of that doorway.  Several members of the radiation team were milling about, and somebody – I still don’t know who it was – took the cupcakes from my hand so Kara could wrap me up in her arms.  She whispered how proud she was of me for the way I’ve handled this whole ordeal, and then walked with me to the treatment room.  I felt like a queen in a very fucked-up court.


The actual treatment was almost anti-climactic.  For the last time, Carle and Sara shuffled me around on the table, maneuvered everything in to place, and left me alone with my breast and my thoughts.  I was thinking about the fact that my boost site – the area around my scar that was targeted during the last 5 treatments – is a much darker pink than the rest of my breast.  But luckily, my nipple is being spared.  After the weirdly intense pain it was in for a good couple of weeks there, I’ll take whatever small blessings I can get.

And the nipple thoughts reminded me of Elliot, a guy who was training with the amazing Providence Portland radiation team when I came in for my mapping session.  Sara was running the show that day, and the three of us were discussing the fact that my nipple now points vaguely sideways from losing the supporting tissue under it to my lumpectomy.  And Elliot casually starts telling me this story of shaving his chest in the shower one day and accidentally shaving off his nipple.  Shaving it off!  As in, he looked down at the bathtub floor and wondered where all the blood was coming from, then looked closer and saw his nipple laying there.  Detached.  Just, you know, there.  Sara started cracking up and couldn’t believe he had never told her that story before.  All I could think about was the fact that I instantly knew three things:

  1. This guy shaves his chest;
  2. He's clearly not very good at it;
  3. This is gonna be really weird.

I wasn’t disappointed – it was definitely weird – and Sara and the whole gang continued to provide all the weirdness and laughter and support and expertise I could have ever hoped for.
Oh, and Carle came up with a real gem for my last treatment song.  I can't even.

When all was said and done and it was time to leave for the last time, I gathered all the hugs I could from the whole team.  Carle, Sara, Erica, Barb, Kevin, Dawn…everybody seemed to be hanging out (hopefully for the cupcakes!), and it was great to get to thank them all for being so good at their jobs, and just for being such good people.  I felt relieved and excited and blessed.

And I continued to feel all of those things, pretty much up until Wednesday morning.  That was when I realized that the party was over.  That now it was going to get hard again.  It sounds and felt kinda stupid – I’m here to tell you, 6 weeks of daily radiation is plenty hard, and not at all the kind of picnic I ever want to attend again.  But there was something freeing about it, about the process.  Because the process was planned and prescribed by somebody else.  Once I made the decision to have the treatment, to subject my body to the risks of all that radiation, my only job was to show up and take care of my body.  That was it.
Now that the radiation is done, I really have to start to focus on what may come next.  I have to go back in to decision-making mode, and that scares me.  I have to decide, once and for all, if I’m going to absorb the risks of Tamoxifen, in order to try to prevent more breast cancer, or if the risk of other cancers resulting from the Tamoxifen is too great.  I have to start gathering more information about how often I need to have mammograms going forward, and how to weigh those risks.  And I have to factor in the results of my BRCA genetic testing, which I will be getting next week.  Those results could be game-changing, in that if I test positive, the most logical course of action is to have my ovaries removed.  More surgery.  More recovery time.  More risks to weigh.
Sigh.
My body has been so tired from the radiation.  I’m starting to get a bit of my energy back; I still take naps every afternoon, but I recover from that down time faster.  I can see a very faint light at the end of that tunnel.  But now my mind is starting to feel exhausted, from all the next steps to contemplate.
And I wonder how to define my own version of “long term,” in this planning.  I had assumed that by living a healthy and clean lifestyle, I was going to avoid the cancer plague that claims the lives of my family members so young, often in their mid-late 50’s.  “Long term” meant one day becoming a blue-haired dingbat crazy cat lady with questionable stories and a negligible attitude.  But now I know that despite my best efforts, I developed cancer at only 42.  And I wonder what “long term” means now.  I don’t think blue hair is realistic for me anymore.  I wonder if what I should really be gaming for is a fantastically great 10 years of wicked vitality and vibrant energy and excited exploration.  Anything above and beyond that is just the cherry on the ice cream sundae.  Maybe my family history is simply going to be a part of my history, whether I like it or not.  And maybe it’s na├»ve and silly to ignore it when I have what are sure to be some lengthy and complex questions with my oncologist in the coming months.

I don’t know.  I don’t yet know how to separate what I want for myself from what I think might be practical to expect.  Because I would love to be a sometimes-cranky old lady, the kind who waves her cane at the neighborhood kids for cutting through the flower garden, but whose idea of punishment would be less about smacking them with said cane and more about forcing them to sit down and listen to the story of the time I climbed the fence outside Prince’s house to take pictures of his windmill.  I want to live a long and healthy and strong life.  I want to feel powerful in my body, and I want to free my mind from the constant nagging, the waiting for the other shoe to drop.  But I don’t know if that’s possible.  And there’s a “quality vs. quantity” argument to be made somewhere in here.
But let me be clear about one thing: my gratitude has never once wavered.  I am so blessed that my cancer was found so early, so tiny.  I’m so lucky that I was able to avoid the ravages of chemotherapy.  I’m so grateful that my breast, while misshapen and discolored and peeling, is still a part of my body, and that I have every reason to expect it will heal and recover fully.  I’m thrilled to have had a radiation team filled with smart and funny and nuanced people, and a bang-up treatment team in general.  I’m grateful that it could have been so, so much worse.  And it wasn’t.


And I’m grateful that while I’m unsure about what comes next, I’m finished with this piece.  I’m done with radiation.  I’m not done with the pumpkin or the peeling or the lazy eye nipple or the fear.  But I’m done with radiation.  30 of 30.  And as far as I can tell, I’m still standing.




Monday, September 8, 2014

29/30



My penultimate radiation session is in the books, and I am still learning new information about this process.

But first thing’s first:  Carle was back from her trip to Minnesota.  It was so great to have her back, and did she ever pull a rabbit out of her musical hat for me today!  A few weeks ago, I happened to mention that I positively adore The Spinners.  That crazy B remembered, so today, I got “I’ll Be Around.”  What a treat.


After treatment, I had another talk with Alice, my radiation oncologist.  She again looked at my skin and again pronounced it healing as she would expect.  I’ll be seeing her again in about a month, but in the meantime, she asked if I had spoken with Ali, my medical oncologist, about Tamoxifen.   Sigh.

Tamoxifen is an estrogen-blocker that most women with estrogen receptor positive cancer – like mine -- take post-radiation.    It’s pretty much the standard of care these days, and it boasts some impressive results:  women who take it for 5 years experience fewer instances of cancer recurrences in the original breast, and also 30-50% fewer cancers in the other one.  Sounds like a no-brainer.

The problem is that Tamoxifen also comes with some gnarly side-effects.  There are the quality of life issues, like 5 years’ worth of hot flashes, not to mention vaginal discharge.  But there’s  also the more serious risks of blood clots and a huge increase in the risk of uterine cancer.  I already have a genetic mutation that makes me more prone to blood clots, and I don’t see the point in trading one cancer for another.  So I’m on the fence about this very powerful drug.  I will be seeing Ali at the end of October, and we’ll talk more about it then.  In the meantime, it’s one more decision that I will need to make regarding my on-going treatment.

I also learned that radiation can (directly or indirectly) affect appetite.  I had never heard any mention of appetite this whole time, and assumed that was only connected to chemotherapy…which is why I didn’t understand why my appetite has been so weird lately!  For at least a week now, the only food that actually sounds good to me is fruit.  Now, I have always been a bit produce lover, so that’s not weird.  But what’s weird is that I want produce to the exclusion of just about everything else.  And that definitely is weird, because I have never been the kind of girl to shy away from food.  And it’s not even all produce – just fruit.  Vegetables hold no appeal at all right now.  And every time I try to eat any animal protein (I eat chicken, turkey, and fish), I feel like more than a few bites is going to make me nauseous.  



I’m not sure what the nausea is about; nothing in the radiation treatment should be upsetting my stomach.  But I learned today that loss of appetite is often connected with radiation because of the extreme fatigue the treatment causes:  treatment causes fatigue and fatigue causes lack of appetite.  So at least that part makes sense.  I have also been dehydrated lately, which might explain why I am eating my body weight in watermelon and grapes and other watery fruits.  But it feels seriously bizarre to not want to eat.  

The good news about all of this is that I first got wind of it from my discharge instructions.  That’s right: discharge instructions, baby!  While my last treatment isn’t until tomorrow, today was the day I got all my follow-up information, and I kept feeling like the girl who was only one vote away from being prom queen.  Halleluiah!  


And then there’s the fact that one of the radiation therapists, who takes his extracurricular jobs very seriously, likes to change out the pictures on the radiation doors every month, always on a theme.  This month is crime fighting duos.  One door has Crocket and Tubbs from Miami Vice, one has Scully and Moulder from X-Files, and then there’s Crimefighter Carle, A/K/A Cagney and motherfuckin’ Lacey.  I really couldn’t ask for a better team.



Sunday, September 7, 2014

28/30



Friday was my 28th treatment, and it went off without a hitch.  I briefly met with Alice, who did an exam and gave me a good news/bad news sort of report: the good news is that everything looks the way she would expect it to look and there is healthy skin peeking out from under the burned stuff that is peeling off; the bad news is that she isn’t expecting my energy to dramatically increase for much longer than I had thought. I was under the impression that about 2 week after my last treatment, I would be feeling pretty much back to normal.  Instead, Alice thinks that 2 weeks out is when I will be feeling the worst of it!  All the effects, including the fatigue, are cumulative, and there’s a delay on top of that.  So it’s going to take longer than I had thought to get back to the rest of my normal life, to try to create a new normal from what’s left of this, and to stop with the 4-hour daily naps.

Sigh.

But right now I have bigger fish to fry, because I think it’s time to finally address what is, for me, the obvious pink elephant in the middle of this particular room:  sex.


Because the fact is that I haven’t been having any of it.  At all.  For about a month now.  And it’s not because Kara hasn’t made her interest clear.  It’s all on me.  I have been having a really hard time in my radiated body, to the point that I swear to god the people at Fred Meyer look at me knowingly, like they can see my disease right through my clothes, like they have defect-specific x-ray vision or something.   I feel like I look toxic, like my skin must feel toxic to the touch, like I maybe even smell toxic.  They radiate me behind a door that would make the vaults at Fort Knox look like child’s play, so I must take it with me, out into the rest of the world, and it must be recognizable with every possible sense… right?

I dunno.  I mean, the intellectual part of me doubts my own spin.  But I haven’t been able to shake the feeling, even a bit.  The first couple of weeks, I was still in the “what if” phase, and I was still future tripping about how  my skin and general body was going to react.  But then the future part came, and I could see my body reacting, and there no more wondering left to do. I could just look in the mirror, and there were no more guessing games: my skin turned bright pink, some of it turned black, it peeled off, the new skin on my areola looks plastic (I swear, burn victim skin is recognizable a mile away), everything is swollen and sensitive to the touch (or a light wind), and I have rarely felt less desirable in my entire life.

I want, so much, to pretend that last part isn’t true. I want to instead feel like the biggest badass I know for going through what I’m going through, and I want to think that makes me look hot.  But I’m not a badass, at least not for this.  I just got cancer, and then chose to treat it.  Nothing heroic about it -- just a simple and self-serving choice after my breast was in the wrong place at the wrong time.  So I can’t rest on the “yeah, one of my boobs looks like it was transplanted on to my chest from someone’s else body, but it’s because I’m so fucking TOUGH!” line.  Doesn’t work.  Plus, it’s hard to feel or look badass when all you want to do is nap.


And I want to pretend that I’m not so sensitive to cultural perceptions of femininity or beauty or desirability.  Because I identify as a feminist before I identify as anything else, because I’m a high femme, because I’m a dyke… I dunno.  Like my politics or identity markers are supposed to shield me somehow from giving a shit about the fact that one of my most visible gender markers is totally jacked up.  Like I’m supposed to be above it, somehow.

Well, I’m here to say that I am officially not above it.  Not even a little bit.

The fact is that I’m a healthy woman with a healthy sex drive and I’m lucky to have a wonderful sexual relationship with someone I love deeply.  And I have missed it.  I have missed the closeness and the tenderness, and I missed feeling wanted and feeling, dare I say it, beautiful.  Having sex with Kara makes me feel those things.  But I had been denying myself – and her! – of all it because:

  • I was afraid of accidentally hurting my breast;
  • I was afraid Kara wouldn’t see me as a sexual being anymore, just a collection of clinical body parts, one of which is currently dysfunctional;  
  •  I was afraid I wouldn’t be able to get out of my head enough to really be present in my body, so it would end up awkward or, worse yet, painful;

  •  I was afraid that it wouldn’t feel the same.  Like, I was afraid that somehow, what is happening in my breast would prevent me from feeling everything I normally feel when I have sex.

I know that last one doesn’t make a lot of sense.  I mean, despite that whole “the leg bone’s connected to the knee bone” thing, there isn’t actually any direct connection between my breast tissue and my vagina.  But these are the physiological things that make me female, and in my case, that coincide with me being 100% woman.  So to my way of understanding myself, they actually are connected. 
 And for the last month, I suppose I was just more comfortable sitting in the fear that I could no longer have a fulfilling sex life than I would have been trying it and maybe confirming my fears.

But there’s a reason that so many people who are afraid of heights end up going bungee jumping.  That whole thing about confronting one’s fears is powerful and true. 


I’m so relieved and thrilled to report that I was wrong.  Kara and I had sex today, despite my fears, and I felt everything I wanted to feel and nothing I didn’t.  Nothing hurt, I was able to be present in the moment, and Kara treated my body exactly the way she always has; it was obvious that she didn’t see me as any less desirable or attractive than she ever has.  It felt like such an enormous watershed moment for me, realizing that I still get to find pleasure in my body despite the fact that it grew cancer cells without my permissions, learning that the people who truly loved me before I got cancer are going to love me still, and believing that some people -- the top shelf people who can look beyond weird-ass burn lines and rubber chicken skin -- might even still think I’m beautiful.  

I only have two sessions left.  I got this.


Thursday, September 4, 2014

27/30



Today’s treatment was easier than yesterday’s.  Until it wasn’t.

The treatment itself was fine.  Barb and Erica took good care of me, pointed the photon torpedo Star Trek beam at the right place, and zapped me for about 40 seconds or so.  No muss, no fuss.

Then Barb, who is the head radiation therapist, asked if I wanted her to go over everything that happened yesterday in some more detail.  She said she could see the concern in my face yesterday, and wanted to reassure me.  (She also read my blog.)  She offered me a chair in her office and explained everything they were looking at, the various radiation fields and their percentages, the angles in the different photos, and the fact that it looks like my nipple is going to spared much of the boost radiation.  My lung, however, is going to get some, and apparently has been getting some this whole time.  Win some, loose some, I suppose.

She was so sweet, so patient, and offered to answer any questions, at any time.  I felt very respected, and I was reminded that Barb pretty much rules.  She rules in an entirely different way than the way in which Carle rules, but she rules just as much.  Carle rules like the friend who throws you the flamboyant and decadent surprise party for your 30th birthday, filled with cake and decorations and loud music and maybe even some scantily-clad dancers.  Barb rules more like the calm and patient friend who you can call at 3am because you find out your ex got remarried, the one who lets you cry and tells you it’ll all be okay and you believe her.  Both friends are vital, and neither are as good without the other.  


Then I met with Dawn, the oncology social worker.  Dawn really knows her shit about the process of going through treatment and transitioning into what she called “survivorship.”  I hadn’t thought of it that way before… of survivorship being a thing.  It made me think about when I was first told I had cancer, and a few days later, I saw a pink ribbon.  And I realized, unlike the bazillion other times I had seen pink ribbons, that those ribbons actually represented me now.  Me.  I had something so fucked up, there’s a goddamn ribbon for it.  I had the same sensation today, that as of next week, I will be a breast cancer survivor.  Or maybe it’s Breast Cancer Survivor.  Those capital letters seem to mean something.  At least right now.

But what we talked about the most was how I’m feeling, emotionally, as I finish up my treatment.  I only have 3 sessions left, and it feels exciting and scary to know I’m almost done.  And those feelings are predictable and a little bit boring, to be honest. I mean, duh, you know?

What feels overwhelming to me right now isn’t the fear or the excitement.  It’s anger.  It’s more than anger, really, but I don’t know the right word.  Fury comes to mind.

And it’s not the kind of anger that’s part of the stages of grief or something. I mean, I’m over being pissed that this happened to me, and I’m over being pissed at the disease itself.  My gene pool predisposed me to this crap, and despite my best efforts to hold it off, a few bench presses and kale salads are just no match for genetics.  So it’s not that.

What I’m so fucking furious about is the lack of support I have received from my “friends,” and my “community.”  I have written before about the handful of absolutely amazing people who have stood by my side and offered any support they had to give and listened to me cry and complain and brought me lunch when I was too tired to cook (or eat, for that matter) and even offered financial support while I try to maintain my business throughout this mess.  Those people, and God knows I’m so incredibly grateful for them, have been literal lifesavers.

But the other people, the ones who know about it and who haven’t shown up in any way, who haven’t called or written or even sent a text message?  I feel so… well, picture a mushroom cloud.  That’s pretty much how I feel.


Dawn and I discussed the fact that there are lots of reasons why people don’t show up when the shit hits the fan, and it’s not just fear of their own mortality.  Sometimes it’s just the awkwardness.  Sometimes it’s not wanting to be overbearing.  Some people are so afraid of not saying the “right” thing that they chose to say nothing at all.  I believe all those reasons are true.

And I don’t give a shit about any of it.

Now that I’m almost done with this phase, now that I am about to move toward the next steps of decisions and fears and side-effects and medicines, I feel really prepared to understand the people who have no –showed on me around this.  And I also feel pretty prepared to tell them all to fuck off.
I said as much to Dawn.  She gave me a knowing look, a look that said that she had heard it all before.  It wasn’t a judgmental or shitty look, not a look of disdain or pity, just a look of familiarity.  So I guess I’m not the first person to feel abandoned by this process, and by the people who can’t stand up to it when they don’t actually have to.

But I do have to. I don’t get a choice. I got and get to choose my treatment, yes.  I got and get to choose my team and whether or not I follow their suggestions.  But I don’t get to choose to not stand up to this cancer and tell it to go fuck itself against a wall.  My momma didn’t raise me to crouch in the dark corners and hide from the hard stuff – she taught me to take off my rings and make it choke on its teeth.  


So that’s what I’m doing.  But I’m doing it with the help of far fewer people than I would have assumed.  And that sucks.  It just sucks.  And I don’t know how to forgive those people.  I understand them, but I don’t know how to forgive them.  And I don’t even know if I want to.  It might be a phase that will pass – Dawn’s look suggested as much.  But for now?  No way.

I have 3 treatments left.  Barb will take good care of me tomorrow, I know.  Then Carle will be back Monday and Tuesday.   

And then… who the hell knows what happens then.  But I’ve finished 27 of 30.