2015

My older brother and me, 1976 style

When I was a kid, I remember very clearly sitting with my older brother playing with our Mickey and Minnie Mouse bicentennial spark-making toys--"friction sparklers," the kind of toys we played with in the 70's, probably while smoking our candy cigarettes and rolling around unbuckled in the back of someone's station wagon, because apparently child safety hadn't been invented yet back then--and talking about how old we'd be in the year 2000.

As a 6 year old, being 30, which I was in 1999, seemed impossibly old.  Old in the way that was unimaginable back then and did not truly even feel attainable.  Me, 30?  And here I am already 45.

And thinking on it, our 2000 lives really were unimaginable to us the way we lived in 1976.  Microwaves were new and amazing, as were 4 function calculators.  Color TVs were rare and there was no such thing as TV remotes or VCRs, much less DVDs or Blueray. Computers, video games, digital cameras, cell phones, the internet were all strictly sci-fi creations.  There was really no way we could have made that mental leap from 1976 to 2000 without so very many things that happened in the intervening years, all the different steps that brought us from one time to the other.

And now we're in 2015.

I started writing this post thinking about everything that's happened in 2014.  I didn't know I was stage iv this time last year, so in addition to all the things that have happened outside of medical issues, there have been some crazy big medical things to wrap my head around in the past year.  I feel victorious sitting here in 2015, I struggle with doubts, but I know I'm very lucky right now.  There were times in 2014 when I was worried about it, whether I'd be here, what shape I'd be in if I was. But I am here, and I feel really good.

But the thing that's come to me as I write this, thinking of me in 1976 thinking about 2000 and how we had no idea at all about all the crazy innovations that, for better or worse, have changed our lives so profoundly.

I have no reason to believe that the same won't be true in the coming years when we look back at 2015.

There have been a lot of promising things going on in cancer research.  Palbociclib is almost to the market and I recently heard about another new drug called Pictilisib that's showing interesting results in cancers like mine. At a stage iv conference I attended last October I heard about all kinds of other pathways that researchers are trying to disrupt to stop cancer from growing.  A lot of these things won't work out, of course, but I hope some will.

While I was a busy 6 year old in 1976, playing with choking hazards and  setting off sparks around flammables with bicentennial Mickey and Minnie, all the drugs I've taken since 2012, the treatment regimes and knowledge, the ways to manage side effects, none of this was even close to reality back then.

And now people keep saying we're right on the edge of a real sea change in how cancer is treated and the life saving possibilities.  Maybe that's partly fundraising talk, a means to entice donors to support this research or the other, but the world is constantly changing and the unimaginable becomes normal at an astonishing rate.

I sometimes find myself feeling nostalgic for the way things used to be in the world when I was a kid.  I miss a lot of the good things about the way life was for us in the 1970's.  I think about my brother and me running through sprinklers or playing with the garden hose on hot summer days.  I remember sitting out with my grandparents every evening after supper all summer long, just enjoying the cool air and me listening to the grownups shoot the breeze. I remember roaming through the woods for hours on end pretending to be all sorts of things from pioneers to explorers to circus stars to crooks.  There were a lot of sad things about my life in those days, but there are so many sweet memories, too.

But if I look beyond my nostalgia, I recognize that in many ways our lives really are better now: in the tools of our daily lives, in child safety, and (importantly for me) in cancer treatments.  My hope is that in the next few years we look back at 2015 and marvel at how much progress we've made.

I Remember 2012

I tend to get pretty wistful about life before cancer.  It didn't seem especially carefree at the time, but in comparison I guess it was.  Back then, like most youngish adults in the first world, I expected to live pretty much forever and I took it for granted that I'd someday be an old lady bouncing grandchildren on my knee.  I may still get there, but if so, it's going to be through the wonders of science and a whole ton of things all lining up in just the right way.

Sometimes thinking about how things were back then (you know, waaaaaaaay back in 2012--but it sure does feel like a long time ago) makes me smile.  And sometimes it makes me cry. And a lot of the time I just kind of puzzle over everything that's happened between now and then and try and put it all together.

Yesterday, I pulled up the medical files I had requested last February when I was newly officially diagnosed as stage iv (at the time I had requested them for my second opinion appointment).  I wasn't planning on researching my whole breast cancer history at the time, I was really just looking for one specific fact.   But, it sure was a trip down the rabbit hole reading through all the scan reports, visit summaries, surgical reports, pathology reports, test reports, and so on dating from my clean mammogram in October 2011 to the April 2012 first cancer diagnosis to that diagnosis in February 2014.  Well, not really reading it all, more like skimming, reading, skimming again, actually--there are over 300 pages there, and they only pulled the things relating to breast cancer. It's a crazy big chunk of my life in there.

I saw things in the reports I don't think I knew before, although that may just be my pretty shoddy memory and a function of how much was going on all at once at those times.  It turns out I had a tumor marker test run in the summer of 2012 and it was only 9 points lower than my latest scores--of course, those 9 points make the difference between "elevated" and "normal range" but still, less than 10 points seems like it must be good, right?  I knew I had had a blood transfusion during my epic many hour surgery to remove and reconstruct, but if I knew my bloodtype at the time, I had since forgotten it (for the record, it's O+).  I'd also forgotten how many days I was in SICU (2 days) before they wheeled me in my bed around to the elevators and up to a regular floor, but I do remember how kind the nurses were and how the nurse who oversaw my transfer up to the regular floor told me the sunsets were just gorgeous from my new 6th floor room--she was absolutely right, too!

But a lot of the fascination for me was in seeing again how it all unfolded, remembering and being reminded of those early visits from the appointment summaries.  Starting with that first appointment where my gynecologic nurse practitioner felt the lumps I had discovered and ordered some tests, to the imaging, to the biopsy, to the various scans and planning appointment and procedures, assessments, treatments, and on and on and on.  

I know some people dislike the word "journey" applied to cancer, but reading through all that stuff, remembering how I started out not at all worried and things just kept moving farther and farther away from what I wanted, I'm thinking journey is about right.  Not a journey in the sense of "hero's journey" with a nice story arc of personal growth and increased ability and confidence.  More like the "what a long, strange trip it's been," kind of journey.

In many ways, I'm 100% still the same.  I'm in the same job, in the same house, loving the same family, cooking the same foods, holding the same faith, living the same life.  Even physically, I'm not that different.  There's cancer in my bones, sure, and scars on the outside, a million tiny surgical clips and other evidence on imaging scans, but it's not something most people can tell by looking at me or anything.  It's not a huge piece of my daily life that's different now, but it's a piece whose impact just keeps echoing back, forth, and all around into just about every corner of my formerly well-ordered life.  

I'm learning to live with the changes and I'm getting on with living a life and not being just cancer, but looking back at the woman who walked into the doctor's office in April 2012 and looking at the one who walked out of the doctor's office in January 2015 and will return again in February and March and April and May and on and on, thinking about everything that has happened between then, sometimes it just kind of floors me to look at how much everything has changed.

Victorious

NC Wyeth, WWII

With this week's good report, I'm trying to be strutting around (on the inside) and feeling victorious.  I was genuinely feeling that way for a couple of days, but then I heard about a couple of people who aren't doing well and some things about a couple drugs in development that aren't that good and suddenly it feels like a weird thing to be feeling so great about a good report when I know I still have incurable cancer.

Maybe it's because every good tragedy has those temporary highs to key up the emotion before the great fall.  Hamlet had his "I gotcha" play within a play, MacBeth was crowned king and so was Oedipus, even Romeo and Juliet were married with a plan. And obviously every one of these characters fell.  And fell hard.

Maybe somewhere inside I'm sort of thinking, "well, if I can manage to avoid the glorious high part, the one where I think I'm all that because I have no idea what the future holds, you won't be able to go on with the part about the terrible downfall, right?"  I guess I forget sometimes that the author of my life isn't Shakespeare (you can tell, just look at my words, not very melodious and not a bit of iambic pentameter, or at least not on purpose).

Besides, we live in a culture that frowns on that kind of thing.  When I say, "Pride goeth before a fall," you're probably not thinking, "Who says 'goeth'?" Because, it's that familiar to us.

And so I need to keep keep reminding myself that I can celebrate this good news and not think too hard about the next scans or the ones after that or the ones after that.  My husband and I have a joke about getting the 10,000 steps a day: "How do you get 10,000 steps? You take 1 step 10,000 times!" (yes, we're really that corny, that's another reason you know the author of our lives isn't Shakespeare).  If I'm fortunate enough to live a decade it will be because I've strung together good scans 3 months at a time 40 times in a row, not because anything could made it so I could just relax and know I'm good to go for the next 5 years or so.  Stupid cancer doesn't work that way.  I just heard about a woman who made it 5 years on Faslodex and just now has progression--there may be rhyme and reason, but I sure can't see it.

But at the same time, who would want to look back over 10 years of beating cancer and realize that it was just ten long years of stress and worry about what the future held?  If I'm lucky enough to make it 5 years on Faslodex, do I really want that to be 5 years of fear and trepidation?

So I'm pushing myself to live in the moment.  Allow myself to feel victorious today and not to worry too much about tomorrow.  Go all Matthew 6:17 on this business and have a little party.

Sometimes my blog is pretty much just one long attempt to talk myself out of worrying (one more reason you know Shakespeare had nothing to do with this, he'd have let me go on this way for a minute, tops, before throwing in a comical secondary character and a few bawdy jokes to lighten things up already).

So instead, today, this afternoon, I'll be trying something different.  Today I'm going to be poking the universe with a sharp stick and pretending I'm not afraid.  And every time I think, "well, but..." I'm following that up with, "JUST STOP IT!"  Because I can't really stop bad things by tempering good things, that's just dumb.

Besides, you know what?  My latest scans were pretty awesome and physically I feel great.  So there is that. 

I'll have let you know later how this little experiment works out.

A very good day

Today I got my latest scan reports:

For those of you who don't speak cancer and/or radiology (and never mind the slight/slightly thing, because that is not what matters here!), it means the cancer hasn't spread in the last 3 months and some spots even seem to be getting better--this is fabulous news!

No guarantees what the next scans will hold, of course, much less the future as a whole, but for now and most likely for the next 3-4 months, it means stay the course and feel very happy, which is exactly what I'm going to do!