Monthly Archives: April 2013

Rollercoaster

So, yesterday was a rollercoaster.  So much so that I’m not currently sure if I’m up or down.  And the results and choices are so complicated right now, that I might not be able to make this make a whole lot of sense.  I’ll try, though.

First let me back up and say that I found out, yet again, that I am not super original.  While I write posts, wordpress populates things on the bottom I can link to, using the words I type as clues to what I might be interested in.  One of the suggestions was The Scar Project, who’s tagline is, “Breast cancer is not a pink ribbon.” At first I thought, “Hey!!  That’s like me!!”  Then I realized, “Oh. I’m like them.”  Only way less cool.  Their site is pretty badass.  You should check it out (Okay, maybe not you, Mom and Dad.  I’m not sure you’d like it).  But it is basically a photo essay of all of these women showing their scars from their various breast cancer-related surgeries.  This experience reminded me of reading Stuff White People Like, which I’m convinced should be renamed Stuff Liberally-minded White People Like.  One the one hand, I was rolling with laughter at how exactly the author nailed us.  And on the other hand, I realized what a big stereotype I am.

Okay, back to the rollercoaster.  So, I was sitting in class, checking my phone compulsively, like a teenager with her first crush.  I turned away for approximately 30 seconds to say some snarky little comment to my friend Jordan, and when I looked back, I had missed a call from my surgeon.  Figures.  The message was about preliminary results and they were GREAT!!!  Of the five sites they had biopsied, only one was malignant, and that was the one that was closest to the already-known cancer.  One of the places they got benign tissue from was the lymph node.  This meant that the most suspicous-looking of my lymph nodes was actually  cancer free.  All of a sudden, lumpectomy was an option again, although it would still be a pretty big chunk they’d have to take out — about 9 cm — it still was better than hearing it had spread all over.  I mused a lot about good news being relative.  A few weeks ago, finding out I’d have to have a lumpectomy and radiation was devastating.  Yesterday, it felt like the best news ever.

But remember, rollercoaster.  (Don’t worry, the dip isn’t really that big.  It’s more of the twisty type). So after a day of phone tag, my surgeon and I finally connected later in the evening.  The final results indicated that although the tissue at the lymph node site wasn’t cancer, it also wasn’t lymph tissue.  Apparently they roll a lot during these needle biopsies.  I have to say, the radiologist was great.  I watched the ultrasound the whole time, and it sure did look like the needle was right in the middle of the node when she took her sample.  But the path report says otherwise, so no luck there.  Which, I’m reminding myself that this doesn’t mean the node is actually as shifty-eyed as it appears.  It just means we don’t know yet.

The other thing that’s funky about my results is that they are indicating they are one stage of cancer, but the cancer looks and feels like another stage of cancer.  And it has both the surgeon and the radiologist confused.  They keep saying, “The results say DCIS (ductal carcinoma in situ) with invasion, but DCIS doesn’t make a mass like yours.” We still don’t know about whether or not the cancer is estrogen and progesterone-receptor positive, which will tell us something about whether or not to do  chemo (I think…. I was less clear on this after talking to my surgeon yesterday.  I do this thing where I can understand for about 3 minutes.  Then my brain shuts down).  Hopefully we’ll hear about that today or tomorrow. But my surgeon did say that chemo is looking less likely, which I was thrilled about.

So, I have two choices.  I could have a lumpectomy right away.  Because my surgeon thinks the cancer is more invasive than the results are indicating, she wants me to think of it less like a curative lumpectomy, and more like a really big biopsy that will give us more definitive information about the cancer, and buy me time to decide whether or not I want reconstructive surgery.  Reconstructive surgery is a whole other post.  If I go with lumpectomy, my surgeon thinks I will likely need another surgery anyway, since she doesn’t believe the pathology results.  But, it leaves the door open to other options.  Mainly, reconstruction.  And, it’s possible it could end with a lumpectomy.  Not probable, but possible.

Or, I could just have a mastectomy now and be done with it.  If I choose that option, I’m basically saying no to reconstruction  for a few reasons, one of which is the availability of the doctors who perform the reconstruction.  Again, I’ll explain more about reconstruction in another post.  So basically, I’m choosing between deciding everything now, and having peace of mind, or keeping options open, and giving myself time to decide about reconstruction.

It should surprise nobody who knows me well that I am delaying the big decision.  It’s like choosing to be in a Ph.D. program.  You get more time to decide what you want to do.  So. Lumpectomy with sentinel lymph node biopsy.  May 8th.  Here we go.

My unwelcome guest

This first one is going to be a little longish. There’s a lot to explain. So maybe I should start with the Why.

I was recently diagnosed with left breast cancer.  At first we thought it was caught at the earliest stage.  I even joked with my sister that I had said once when working in oncology that if I had to pick a cancer, I’d pick that.  She recommended that next time I pick marshmallows instead of cancer.  Point taken.  Now, however, the stage (how far it has spread, basically) is unclear.  Subsequent testing (MRI) make it look as if it might be more involved than thought.  And it seems as if every test I have creates the need for another one, and delays having any answers.  This is not only frustrating and scary for me, it is also those things for the people who care about me.  And it creates this need to have difficult conversations over and over again.  Don’t get me wrong,  I love to connect with my circle.  But it is also emotionally exhausting.  The worst part about all of this is seeing the pain it causes for others.  So a friend of mine suggested a blog.  So here I go!

Why nopinkribbonsplease?  It’s not that I am anti-breast cancer research or support.  I’m not a jerk.  It came up when I was sharing my anger and irritation with my therapist, and she got it right away.  She said, “Yeah, I can see that.  It’s like you’re relegated to a life of pink ribbons from here on out.”  Exactly.  I love my therapist.

The point is, I’m not just a breast cancer patient.  A pink ribbon doesn’t describe me very well at all.  It says nothing about my relationships, which are wildly important to me.  Or about what I like to do.  Or maybe more importantly, what I like to say that I do when I’m actually doing other things.  For example, I say I like to hike.  I like to plan to hike the next day.  What I’m actually doing while I’m planning a hike is sitting on the couch, eating Ben and Jerry’s ice cream, and watching The Mindy Project.  I also say I like research.  What I actually do is get on facebook, or go down the hall to visit Renee, and talk about how I’m not getting any research done.  But I digress.  A pink ribbon doesn’t tell you that I’ve spent the last four years of my life working on my Ph.D.  Or that the Ph.D. will (hopefully) one day be in psychology.  Or that my focus is school psychology.  Or that my research involves creating safe schools  LGBT youth.  It doesn’t say that I am very political, intensely so sometimes.  It doesn’t tell you that my brother died only a little over a month ago of cancer, and I’m pissed that my family can’t seem to catch a damn break. Or that I actually don’t really like the color pink, and it irritates me that just because this disease affects mainly (not solely) women, everything about it has to be swathed in pink pink pink.  Pink ribbons make me feel as if my world is shrinking to only include the one thing I’d rather not be included.  Like all the fun, smart guests have left my party, and now I’m just stuck with this unwelcome guest, the one I didn’t even invite.

Perhaps I’m in denial, not wanting to join the ranks of breast cancer patients, dragging my heels, what have you.  Maybe someday I’ll decorate my whole house in pink ribbons and tattoo my body with them.  But for now, no pink ribbons please.  Why the please?  Because that’s just polite.  That’s how my mama raised me.

So… the What.  I will use this as a way to keep everyone who wants to read it updated on the latest.  That might include which tests are coming up, what the results are or when to expect them, or maybe just what I’m feeling about it all.  I guess I don’t completely know yet.  Maybe it’s also a way to not ONLY sit on the couch and watch The Mindy Project.  Because I’m scared of the day when a plan to go on a hike is postponed not due to laziness, but because it is wildly unrealistic.

So far, I have had mammograms (irregular), ultrasound (suspicious), a biopsy (left breast invasive ductal carcinoma, staging and size unknown because the facility I went to didn’t do enough testing) and MRI (“a lot of activity there, even in the right breast”).  The MRI made it look as if a lumpectomy may be out of the question. Tomorrow I go in (not to the same facility) for several (up to seven) biopsies and ultrasound.  The results from those should tell us the extent of the cancer, and whether the cancer cells have hormone receptors.  That, in turn, will inform what type of surgery, whether chemo and radiation are necessary, and which should come first.  I’m hoping to know by next Wednesday.  I’ll let you know when I do.