March 25, 2016


I did leave you hanging a little--I got a message yesterday that all my pathology from everything that they removed was clear.  Clear.  As in no little itty bitty cancers, no precancerous cells.  So there's a sigh of relief.  I missed the phone call, and as I went to listen to the voicemail message, my hands were shaking--I was successful at putting it out of my mind until that moment, and I have no idea what I would have done had it not been fine.  Well, maybe I have an idea, but I didn't want to create that Plan B until I had to.  Again, I have a lot of processing to do to know what "all clear" means to me.

There's something I've been meaning to say to y'all, but I don't know if I can phrase it quite the right way.  After my last couple of posts, I get comments and feedback, all very loving and supportive.  Thank you so much for that.  There was part of me that was having a gut reaction to some of that; specifically the comments that talk about me being an "inspiration" or "brave."  I was ready to reject that because it's uncomfortable.

What I did when I got my cancer diagnosis was what anyone facing a hard situation does: find a way to get through it.  It's such a selfish focus, and there's nothing about it that felt heroic in any way.  It's pure, basic survival instinct--I did not save anyone or help anyone else with my journey, and I asked a lot of those around me to get through it.  And I blabbed about it and overshared here, and again there's a very selfish instinct behind it--to be recognized and be loved by others.  Getting comments and feedback and people to read my stuff and "likes" was all a very me-focused thing and I was not above it.  Still not, apparently!

So when people used those words in the feedback, there is a part of me that balks at that because I know my own insecure motives behind it.  I would feel guilty for not saying something about it.  And there is also the feeling out there in the survivor community that it becomes almost a novelty or fetish to make so much of survivor status when a lot of us don't feel worthy of always wearing that badge.  Some of it, I think, is the unease we will always carry with us that we are never out of the woods; some of it, I think, is feeling like it's a weird thing for which to get recognition.

But then...there's a part of me that had to say that I don't get to define what makes people feel inspired or how they define bravery.  I have to feel comfortable with just feeling honored any time somebody associates me with that, that it stokes something in them.  I have to hope they are as generous with words like that to other people in their life.  Knowing the awesome people in my sphere, I am assured that you sprinkle it around generously.  But I'm going to say it anyway: use it liberally.  Tell other people when they make you feel inspired or embolden you to do something--it may mean more to them than you ever may know.

And I guess sharing of yourself and your experience can be meaningful to others, too.  It helps create a sense that we are in it together.  This may be more than a sophomoric creative writing exercise after all, if other people get something along the way.  So I'll close today with Fred, and another thank you.

Fred Rogers (also known as Mister Rogers), once said, “Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.” 

Thank you.

March 21, 2016


4 days out from surgery and feeling...pretty good overall.  It has been a steady progression for the past days.  Thursday was a blur of nausea and pain and coming out of anesthesia.  Friday was pain--interesting short-lived-but-horrible pain--and getting ready to go home.  Saturday through today have been steady improvements, and each of those days I've had a little outing to start moving again.

I guess I never fully gave the details of what I had done and how I got to this place.  My surgery on Thursday was a BSO & total hysterectomy--that means both ovaries and fallopian tubes out, plus uterus/cervix.  The ovaries and tubes was related directly to ovarian cancer risk reduction with my BRCA1 mutation.  Again, my risk of ovarian cancer based on my family history and mutation increased dramatically at age 40, with a 40-60% lifetime risk.  I had been screened every 6 months for it since my breast cancer, but the tests (CA-125 blood test and ultrasound) are known to be not adequate for catching ovarian cancer in many cases.  Even with the every-6-mo time frame, you can be clear at one appt and have stage 3 or 4 ovarian CA at the next.  Not super comforting.

I had about 5 1/2 yrs of that screening timeline, and obviously all clear so far.  But my last appt in November put me on edge, and I realized I didn't want to feel that way again.  I had some irregular bleeding and bloating for the couple of months leading up to the appt, and they did a uterine biopsy and pap in addition to the regular tests.  More test, more waiting, more nervousness--all clear, but in that time I realized that if I went into my next 6-mo screening and did find cancer, I would be unrelenting on myself knowing my risks and not acting.  I would have maybe made different choices at a different place in my life, but I can't pretend it's only about me when Olive's involved.

So, on with it.  Out with the ovaries and tubes.  Why the uterus, too?  Well, we've had a complicated history.  I've had sizable fibroids that were a factor in my pregnancy and have caused be severe pain in the past, and keeping my uterus and cervix would have kept some other areas of increased cancer risk with my risk factors and made hormone replacement more complicated.  So out with it, too.

I have started hormone replacement, which sounds like a big no-no when you think about breast cancer and the studies over the last decades.  Funny enough, though, that my cancer type (triple negative) is the one where they do consider HRT because my original cancer didn't feed on estrogen or progesterone.  So they okayed it, and I am jumping on it.  Not just because hot flashes and low libido sound not fun--because there are significant impacts to bone health, heart health, and early-onset dementia with early menopause.  Sudden, surgical menopause is a big cliff to jump off for my body, so I'm trying to make it more of a gentle slope.

Okay, I'm done fem-splaining to you about that.  Anyway, I'm recovering well, watching some Netflix, getting food deliveries from family and friends, napping a lot.  Not a whole lot of emotion on the other side of it.  Yet.  We'll see.

Thank you again, for all of you pitching in and checking in and sending love.  I'll keep you posted.

March 12, 2016


Our huggable mascot
Let me start by saying thank you.  If I haven't been clear, the amount of love and support and patience and empathy I've received is way out of proportion from what I'm having done.  I'm always conflicted about dragging you into this while I'm incredibly grateful that you're there.  You people are all just the best.  If I ever take that for granted, call me out on such bullshit.

So we're less than a week out from a routine surgery.  There is some comfort in that word and that thought.  A dime a dozen.  So many happen every day, and they've figured them out pretty well by now.  Yes, I'm happy to have a surgeon that has performed hundreds of BSO/total hysterectomies.

But it's hard to go into something like this thinking that there is nothing unique that will stand out about you when you're lying on the table.  This decision seems obvious to any gynecological oncologist, and I know that.  It's anything but routine for me, however.  I don't know how I feel I need that acknowledged to my satisfaction--it's just going to be there.

There will never be a time that I feel I should have had to settle for removing parts because there are no better answers to reduce my risk.  I am removing my female identity piece by piece, and there is a level of loss in that that is about much more than not having the parts themselves.  Yes, I can make light about never having to wear a bra and never having to deal with another period again--they can be pros of this whole process.  But it has taken a lot and will continue to take a lot to find my own femininity and confidence as I go forward.  This particular surgery hits me as a loss of youth, too--I am coming out of childbearing years and into menopause in a day.  This feels like a much bigger leap than I want it to, and I wish I had a sense of where I'd come out on the other side.

I'm sad, I'm mad.  I'm raging and I'm mourning and a little scared.  When I feel that way, I just want to rush through it because it's so uncomfortable.  So that's exactly what you'll find me doing in the next days--rushing around.  Just let me and give me space to.  Yes, I'm stressed out.  Those of you watching and wanting to help, know that nobody has to figure that out for me or try to make me stop--this is my routine to work through the hard stuff.

In the grand scheme of things, this isn't a big deal.  Hopefully I will integrate that into where I'm at and move on, because the rest of where I'm at is good.  Goodnight, village.  Thanks again for letting me live in it and take what you offer to help me move forward.

March 3, 2016


This is an interesting concept when it comes to me and cancer, to having this surgery.  The whole idea is risk-reduction, is taking me from having a 40-60% lifetime ovarian cancer risk to none.  Sounds like it should bring relief, right?  And I'm trying to think I'll get there.

But let me back up a few days first.  A little interesting exercise came up starting over the weekend, and it was way too relevant to this discussion.  Olive and I went out of town for the weekend, and it involved driving about 4 hours.  Done it hundreds of times, but this time freaked me out.  I had some vision and spacial-perception changes as I was driving that made me feel unsafe.  (Yes, I was cautious and we made it safely, but I couldn't do the full drive in one night.)  It continues on, and I've had pressure around my right eye and sinus area, too.  Easy enough to say it's likely a sinus infection or maybe I need my eyes checked, but...

But then back home Sunday night, I was feeling it and thinking about it and freaked myself out.  I was up past 3am, and I can't think of the last time something's kept me awake.
And then I tried to reason with myself the next morning and talk myself out of it, but there's a part of me that can't disregard the possibility.  And then I paint the picture for someone to get a second opinion, and they aren't talking me out of taking it seriously.  And then I send a message to my oncologist electronically and she calls back.  Pretty quickly.  And, with the disclaimer that it's probably nothing, she wants to schedule a head MRI.

Had it yesterday.  Results are all normal--it was nothing.  Phew.

I want to feel like this surgery and all the changes it will precipitate will ultimately bring a sense of relief, despite the changes that come with it.  I have a lot of conversations with myself wondering when I'm ever going to start feeling like my life is a little more long-term.  I'm trying to conceptualize what it would be like to live into my 70s, or 80s, or 90s.  I don't know that I've ever thought in terms of growing into old age.  Not even into my 60s.

That bothers me.  Believe me, I do feel there is a lot to be gained by living in the present, but life also necessitates planning ahead and anticipating what may come.  And I'm happy with Olive and my boyfriend and want to plan for a future.  I want to figure out what I'd want that to look like.  I really want this surgery to feel like it has a tangible benefit, and I'm worried that things like this week are going to drag me back into this present survival mode when I'd rather leave it behind me.  It makes me feel weird and fatalistic and dramatic when things like this come up, and I don't know who to bring into my bubble of worry and when.

I also have a week of waiting post-surgery to see if the pathology shows anything in what they remove.  I'm still bracing myself for having to go down the road of a new cancer for now.  Dammit.  You can think it's not likely, and I agree, but neither was my first cancer.  I want to walk out of the hospital in 2 weeks leaving all the cancer worry behind me.  I'm hoping it will be much better, but I wish it was more magical than that.  It's something to keep carrying.

Maybe it'll feel a little lighter, though.