October 23, 2016

Look me in the eye

Each of these last years, when October comes around, I haven't known quite what to do with it.  One year I went on a decent rant about Pinktober and awareness--I don't feel the need to do that this year. 

I do, however, feel like each October I need to think about what it means to support the other people who have gone through cancer.  I want to be sure I am maintaining some integrity in how I live my life so that I'm not undermining these same people.

So here's what I feel the need to do this year: get a little political.  (This is where some of you groan, roll you eyes, and close the post.   Thanks and goodbye for now--I understand.) 

There's a lot to really dislike about this year's political season, and I don't think it has brought out the best in many people.  I could go on and on about various political issues for hours, and with some friends I do, but I don't want to get lost in the weeds here.  It's easy to get cynical and think that ultimately not much changes and there's not much that the average American gets out of it.  Now I don't buy that kind of cynicism, I know that elections DO matter and take our country in very different directions, I know that every politician isn't the same.  Our system of government is sooooo complex, and there is no way to boil it down to a slogan or a single-issue for me.

But I do want to focus on one issue that is very political and for me, very personal: healthcare.  For me, how we view healthcare is very representative overall of how we treat each other as a society.  It also matters to me because it is my chosen profession.  But I am bringing it up in October to remind everyone of how it ties to how we treat our breast cancer survivors.

It is an extremely easy catch phrase to throw out "repeal Obamacare" and call it a "disaster".  Yes, it is easy to say that healthcare costs have not come down yet and that the program hasn't always hit its goals.  But please, when you vote for people wanting to take away the ACA (Affordable Care Act) programs and have no ready replacement plan, please think about what that means for those of us with cancer in our present or history.  Please think about what you'd take away from me.  Yes, me specifically, and many of my friends and family.

Look me in the eye when you say you want to get rid of the protection from denying insurance coverage for pre-existing conditions.  Tell me that I should have to face insurance premiums that I can't afford because of my pre-existing condition if I ever lose or want to leave my job.  Remember, I was diagnosed at 34, and diagnosis certainly happens younger than that.

Look me in the eye when you want to get rid of annual and lifetime benefit maximums.  Look me in the eye when you vote to get rid of protection from rescinding insurance coverage in the middle of a diagnosis. 

Look me in the eye and tell me that routine check-ups and screenings shouldn't be guaranteed coverage for me or for Olive.  Look me in the eye and tell me that if Olive inherited my BRCA1 mutation, that she shouldn't have protections against paying astronomically more for insurance for her lifetime.

Again, the ACA isn't perfect by any means; we have a lot of improving to do.  But when you vote for people who want to get rid of the protections that came with the ACA, you are potentially taking those protections away from me, and I take that personally. 

It's one thing to support breast cancer awareness and breast cancer survivors, and I know so many of you do that (and I am grateful).  It's another thing to be consistent in the policies and the politicians we support.  I'm not just talking about the presidency--there is a lot more at stake for healthcare with the senators and representatives we send to Congress.  There is a lot more at stake in how we choose state senators and reps who decide how state programs supporting low-income residents and children are run.  These are real policies with real impacts in the cancer community, low-income communities, and our community as a whole.

This is a very simplified version of how the ACA impacts cancer patients from the American Cancer Society, but it helps me to see it written out: http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-026864.pdf 

And a summary from breastcancer.org:

I know this is just one piece of a complicated puzzle of who we vote for and why.  I know we don't always have candidate choices that reflect every one of our values.  Just remember how much it matters for the day-to-day lives of people, and vote with conscience, conviction, clarity, and integrity.


Artery Ink: Mara Natkin & Gloria Ramirez

June 25, 2016


Six year cancerversary

This was certainly another year of change, another year of dealing with the aftermath of my diagnosis.  But then life is all about taking the outcomes of what came before and making the next step, isn't it?

I'm doing well, I think.  Not 100%, not where I want to be, but well.  6 years ago, before my diagnosis phone call, I was planning a life with my husband and my baby and had no idea this was what it would look like in 6 years.  I've had a lot taken out of me, in every sense of that statement.  I've spent the last years trying to fill it back up--in fits and starts, and not always with the best things for me.  I've had years of pain and fear back me into a corner in my own body, and chunks removed.  Now I'm trying to expand myself to re-inhabit my own space.  I don't always know what to do with that.

I was trying to think of a metaphor, a theme, a...something for this year's milestone.  I'm not good at coming up with metaphors.  I started out thinking about the last six years in parallel to my beautiful six year old and thinking about our growth together through this, but it was a stretch so I gave up on that.  Olive is Olive, and barely 6 anymore, and on a totally separate trajectory from where I've been the last 6 years.  

Then I was out in my garden.

There are a lot of metaphorical things one can say about gardening and growing things and weeding and so forth.  I'm going to take this a little more literally, though, and it'll all come out in the wash.  My garden has been the perfect mirror of where I've been in the last years, especially the last 4 on my own.  The garden was not my baby, my passion, my idea, but I was left with it and had to figure out what to do.  

How these last 4 seasons have been have mirrored a lot.  I tried hard to go all out in the beginning, trying to make it a f@$* you statement that I could do the same thing and didn't need help.  Then I took some help.  Then it got away from me again and I didn't have the energy to match my original bluster.  Then I accepted whatever I could get out of it, and let nature take over the rest.  Last year, I had intentions but did nothing with it for months, until finally I accepted help to just cover it up and minimize the weeds.  This year, we'll see.  I planted, I'm sorta keeping up so far but not stressing about it, and I'm getting some results.  But not everything sprouts.  

And something keeps nibbling down my peas--I don't think I want to make that a metaphor for anything, though. :)

And some years, some moments, some magic happens.  I get to eat some good things and feed them to Olive.  I get Julie to teach me that the purslane that has taken over my beds is actually delicious and good for you.  I get Barry and Olive to meticulously weed at the start of this season.  I get blueberries coming after years of nothing.  

Yeah, the effing mint won't go away despite my best efforts.  Yeah, my strawberries were super happy, but the animals got every single one before me.  Yeah, I've got a lot of weeds again.

You know what's been a constant, though.  The raspberries.  They're easy to maintain with a little pruning and have never let me down.  They bring me and Olive a lot of joy and deliciousness, and I get to share them.  I get behind in picking and the bugs wind up getting a share, but that's life.  That's why there's an abundance.  And they're there even when I'm not putting in my best effort.  

Thanks for being my raspberries, guys.

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.

February 17, 2016


...or, Everything Must Go

I'm restarting the conversation for a little bit while not really expecting anyone to pay close attention.  I have another round of dealing with this coming up.  Not more cancer itself, but what I have to do to get some risk reduction and deal with the implications of the BRCA1 mutation.  Despite being over 5 years out from diagnosis, this is part of the ongoing reality.

One month from today, St. Patty's Day, I'll be having surgery to get rid of my other looming risk, the ovaries.  For those of you who don't recall, the BRCA1 mutation comes with about a 40-60% lifetime risk of ovarian cancer along with the breast cancer (and others).  Let's just call it a 50/50 shot for the sake of ease.  I'll actually be having a hysterectomy along with it, too, for a variety of reasons.  Having a hysterectomy/oophorectomy is very routine, and it feels weird to share it with you in many ways.  Especially weird because people don't tend to share much about their reproductive bits voluntarily ("Attention all: This is the day that I will enter menopause!  Thank you."), and also because it does sound rather mundane.  

I wish I could tell you it feels mundane and routine.  I wish I could tell you that it doesn't bring up a whole lot of feelings and issues similar to the cancer itself.  It seems very petty to make a big deal out of it at this point.  There will be a part of me that is going to keep feeling that way.  But here I go spilling my thoughts again.  The biggest themes will be relief and loss...

So I'm just putting it out there for starters.  I'll be out of commission for 3-4 weeks.  I have good support and lots of people pulling together to offer help.  Hell, I may be the only person I've known that gets a theme party brunch thrown for it--like a reverse baby shower. 

I'll spill some thoughts along the way when things well up inside me and need to have an outlet.  Thanks, guys.