Where is my mind?

Bad news and stress always seems to leave me forgetful.  It's like my brain can only take so much before it's out of room.

When my grandfather died, I locked my keys in the car.  When I was first diagnosed with cancer, I drove all the way from the surgeon's office to work before I realized I'd left my purse on the chair at Dunkin Donuts.  So far with this most recent bad news I haven't done anything that dramatic, but I'm definitely finding myself realizing that I am not, at the moment, at the top of my game.

But still, without any real alternatives, the thing to do seems to be soldier on. And I'm sure my brain will catch up eventually.  It always has before, right (ok, maybe don't answer that)?

I don't feel bad physically.  Which makes sense, it's not like I'm any sicker than I was before Wednesday, it's just that I have some scary news.

So I go through moments of normalness and moments of terror and moments of worry and then back again.  I remember how this goes and I know it will get better.  And, God willing, Ibrance and Letrazole will do a good job and I'll get some good scans under my belt again.  That would go a long way toward helping me relax.

But for now I try fairly unsuccessfully to stop borrowing trouble.  And stop googling advanced liver failure.  And stop imagining I'll have every unpleasant side effect in my little Ibrance pamphlet.  Kate's helpful cancer hint: excessive "worst case" research is rarely helpful (see, now you know!).

And, besides, I'm not a rookie at this anymore.  The progression, drug regime failure, and liver mets are new, but I'm practically an old timer at having cancer now.  So I know if I can just ride out this "just found out" phase, I will get mentally better.

And you (yes, you), please be patient with me while I get through to that.

And maybe also let me know if you see my purse or keys in all the wrong places?

Moving on

Edward Hopper - Compartment C Car

I got some results from the bone scan I had last week and the CT and MRI earlier this week.  My brain still looks good, but my liver and bones are starting to show signs that the cancer is evolving its way around the Faslodex.  There are some new spots on my spine and some smallish areas on my previously unaffected liver.  It's not terrible, but it's not that great, either.

I also have more kidney stones.  Because today is my day, it seems.

So, at the recommendation of my oncologist, I'm moving on to a new drug combo and last month's Faslodex was my last Faslodex.

It was expected that this day would come, and I think I still did better than average, but I was hoping I'd get a longer run of it.

But, starting tonight, I'm on to Letrozole, an aromatase inhibitor.  I'll be combining that with Ibrance, the  new drug from Pfizer that was just approved by the FDA 2 months ago.  Timing is everything.

The Ibrance will take a few weeks to get (it has to come through the mail from a speciality pharmacy) and my oncologist wants me to wait until after I get back from the first away vacation I've taken in years later this month--it should be fine, but it seems a little ironic that I had 12 mostly uneventful months on Faslodex and the one week in 3 years that I plan to get on a plane for fun, and this happens.  As I said, timing is everything.

Letrozole's side effects should be similar to Faslodex.  Ibrance brings fatigue and low blood cell counts (red and white), so that may be a little more of a challenge.  Or maybe not.

The good news is, in the clinical trials, the Ibrance/Letrozole combo had a median progression free survival of 20 months, which compares to 10 months with Letrozole alone.  Those were women who had not already failed a different hormone drug like I did on Faslodex, so it may not be as good for me, but obviously median PFS is a guideline not a promise, anyway.

I guess I'm getting better at cancer these days.  I'm sad, but for now I'm feeling like it's ok.  It's time to roll up my sleeves again and move on to this next treatment.  And fortunately I'm not out of treatments yet.

And so I move on.  And hope this next new thing will be the next new thing.  And so it goes.

My Aunt

Melozzo de Forli - from the Sacristy of St. Mark,
Basilica of Santa Casa, Loreto

Two weeks ago, my aunt died of ovarian cancer.  She was a lovely, lovely person and she died before her time.  I have no doubt that many people will miss her and the strength and grace she brought with her as she made her way about this world.
  
Her sister told me my Aunt mentioned me in her last days, I was touched when she told me and still now which it's making me tear up to think of i--she was that kind of a person and I think that shows a lot about how she lived her life, she was struggling and ill and she was still looking outward.

It's one of those strange ironies that funerals are often mixed with reunions, and loss gets mixed in with the joy of being together again, and this one was no exception.  It was sad that my Aunt wasn't there, it felt wrong.  Yet at the same time I had the joy of seeing wonderful family members I hadn't seen in a while and meet others I'd never met. Two of my cousins have babies now, and watching them play--both little boys are around 1 year old and cute as can be--seemed especially important at a time like that. We've never lived very close by, but I remember my Aunt teaching my own daughter a song with arm motions at that age, I remember her teaching me to say "cookie" in Spanish when I was only a little older, myself, and watching these beautiful little boys of her family, one her own grandson, exploring the world around them felt like a fitting tribute.

I also had the pleasure of meeting the in-laws of one of my cousins, one of the daughters of my Aunt who passed away.  Her in-laws are very special people who have been helping out when they could during my Aunt's rough last 6 months, cooking and coordinating and just generally taking care of things where possible without the slightest bit of "look what we're doing!" or "what about us?"  They're like my own in-laws that way, so I can confidently say that people like that are truly a blessing.

I was thinking about them during my walk today.  How easy it is for people to get caught up in feeling like you need to make a grand gesture.  And how easy it is to get caught up in trying to be careful not to say or do the wrong thing.  And how both of those can make you so paralyzed by the weight of them that you end up doing nothing.  I know this because I struggle with both tendencies.

But the truth is, most of the time it isn't the grand gestures or the perfectly done things that matter, it's being there and giving of yourself and trying.  The fact that these in-laws were great cooks and delightful to be around was beside the point.  It was the pure, simple beauty of people doing what they could do to help and comfort in the middle of an unchangeable and difficult situation.

And I'll tell you, I've had people who helped me through some of my difficult times with my own cancer and an unsolicited meal brought over with love, or an offer for a ride "anytime" that really meant anytime, or a card saying "we're thinking of you" meant everything.  And that had nothing at all to do with whether the meal was delicious or how nice the car was or how eloquently phrased  were the words on a card. It had everything to do with making that connection and saying, or showing, that you care.

People say, "It's the thought that counts" and in matters of feelings and caring, I believe it's true.  Maybe not always true--I'm sure there are some people out there who are looking for stuff or looking to be haters--but when it matters I believe it's completely true.  You can bank on that.

I wish it were true for the physical world.  My Aunt was a person of grace and class and kindness.  She was someone who took care of herself, exercised, saw doctors when needed.  She had a loving family who will miss her terribly and a grandson not quite 1 year old who she won't be able to see grow up.  She deserved things to be different.  If intentions were what counted in the physical world, if being needed was what killed cancer cells and doing all the right things was enough to always bring good health, her family and friends would not have been at her funeral last weekend.

I think most of us know that in healthcare, having a good excuse isn't the same as doing the right things, but it's hard to wrap your head around the fact that even doing the right things doesn't always mean the right outcomes.

My Aunt had a hard time of it over the last several months and in some ways, her sister and immediate family say, that made it easier to say good-bye when the time came.  Knowing that she was now in peace and no longer in pain was a blessing, despite how much they would have liked it to have come about in a better way.  She was also a woman of strong faith, and it's easy to see her watching over her loved ones now from above, like people say, a special guardian angel.

I wish I had eloquent words, special powers, or a better ability to say here what she deserves to have said.  My Uncle did a wonderful job on her eulogy, his eloquent words were beautiful and fitting for the beautiful woman she was.

I wish I could return the favor for the example she set in how she lived her life.  I don't have grand gestures or perfection to offer.  So what I hope is that everyone reading this will understand what I'm trying to say, and maybe take a minute to say prayers, or think warm thoughts, or whatever you have to offer to her husband, her daughters, and the memory of a lovely woman who lived life with courage and grace.  

Taste the Rainbow

Did you catch Marshawn Lynch's pre-Superbowl press conference?  Maybe because I'm shy enough that I wouldn't want to talk to the press either, and I'm sure opinions will vary, but I found it really adorable (and this is coming from a Pats fan, too).  Boy does he love his Skittles!

But that's not the kind of "Taste the Rainbow" I'm talking about here. (If you have no idea at all what I'mm talking about, Skittles' slogan is "taste the rainbow"--see, relevancy!)

A couple of weeks ago, my daughter and I went to a free lecture sponsored by Komen of Massachusetts with Stacy Kennedy, MPH, RD, CSO, LDN, who is a dietitian with Dana-Farber (and some other places, too) about breast cancer and nutrition.

Us, front row to the right as they introduced Stacy Kennedy
(from the Komen Mass Facebook page)

She was a fabulous speaker, not only really knowing her stuff and the science behind it, but also enthusiastic and interesting. To be honest, before the lecture my daughter thought it would be kind of dull and only went to keep me company, but she ended up enjoying it as much as I did and we both learned a lot.  Of course we were the dorks who sat in the front row and took a few selfies before the lecture started, but she's 15 and I have stage iv cancer, so no apologies for that.

She talked a lot about phytonutrients and a plant-based diet as effective parts of making your immune system strong.  And about how those phytonutrients are found in fruits and vegetables and the color of those fruits and vegetables is generally a good indicator of which phytonutrients they contain.  So this is the kind of rainbow she was talking a about:

Of course this wasn't the first time I'd heard that advise, for eating right it's kind of old news, but she was really good about going into why you should (it comes down to vitamins, minerals, and those phytonutrients).

She also talked about how important it is not to necessarily avoid sugar (fruits have sugar, for instance, but also lots of good things with it) but to avoid the insulin peaks and drops that come from too much sugar and refined carbs (white flour, etc).

I avoid artificial sweeteners for obvious reasons, but another thing I found interesting was that even though they don't contain sugar, artificially sweetened foods and drinks will actually cause an insulin spike anyway because your brain is preparing for it based on the taste.  That was kind of cool (ok, if I'm honest, it was cool for the science, but also cool because I got to congratulate myself for not having to deal with that in the first place, even if that wasn't the initial reason, because, hey, there's enough stuff to work on as there is, so it's nice to get a nice spot or two where I'm doing ok to begin with!).

She said that the whole "food pyramid" and the older "4 food groups" that I grew up with were really not based on science and in some ways were really bad advise (I know, nice of the experts to do that to us, right?).  She recommended Harvard School of Public Health and Medicine's "Healthy Eating Plate" instead:

You can click on the image to read more about it (actually true for all of the images in this post), including this beautifully snarky little gem:

The Healthy Eating Plate is based exclusively on the best available science and was not subjected to political or commercial pressures from food industry lobbyists.

Yep, not like we don't say this kind of thing amongst ourselves, but it feels a little sad for the state of things to have to see it in print on a reputable website.

And, one more really interesting thing she said was that only something like 3% of Americans get enough exercise, don't smoke or drink more alcohol than recommended, eat enough fruits and vegetables (actually 8 "servings" rather than the 5 we usually say), maintain a healthy weight, and possibly 1 other healthy "habit" that I've forgotten--it's not in my notes, but I just sort of remember there might have been something else.  And for several years before my cancer diagnosis, I was one of them in several ways (exercise and veggies/fruits).

Even now I have my moments (Christmas cookies, Girl Scout cookies, chocolate chip cookies--you get the idea), but I've been getting the exercise part since May (and am, incidently, waiting eagerly for this coming May when the weather gets better and I don't need to rely on the Nordic Track and mall so much) and had stepped up that fruit/veggies part already and am now stepping it up even more and focusing on colors and adding whole grains (brown rice is not my favorite, but I'm trying new things (like quinoa which cooks in 20 minutes like white rice instead of 40 minutes of advanced planning just to be nasty and chewy like brown rice does).

I don't believe good eating and exercise will cure me, I'm totally relying on high-powered drugs for that, but if it helps the drugs in any way, I have to say, why not give it a go.  Especially since it's probably what we should be doing anyhow and there's not a real downside to it.  

So my fridge is full of vegetables and my fruit bowl has apples and clementines galore and I'm about to zip up my boots and go for a walk before the snow they cancelled Church for gets too heavy and I have to resort to that dreaded Nordic Track.

Of course, as I say all this, I am feeling pretty happy because my husband has just made all of this:

and you know I've already enjoyed one (really, really enjoyed it, too!) and am extremely likely to have more before the day is done.  Because I want to do my part to stay around as long as possible, but the balance is that moments like these, when we all oooh and aaah and mmmmmm as we enjoy hot cookies fresh out of the oven, are part of what it's all about :)

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.