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 :)

Post 37, in which I am a delicate flower

Moonflower
Most years I grow these.  Some years they
thrive and bloom with huge night-blooming
flowers that smell heavenly.  Other years they
don't.  I am starting seeds again this year
because the times they do bloom make it
worthwhile to try.  

On Tuesdays after my radiation, I'm scheduled to stay a bit longer to check in with my radiation oncologist and her oncology nurse to make sure I'm doing ok.  Lately the hip has been aching again, although the consensus seems to be that it's probably inflammation from the radiation itself (read: good pain) rather than pain from the cancer that is somehow returning mid-treatment (read: bad pain).

Unfortunately, the appointments this past Tuesday seemed to focus pretty directly on one thing: Do not under any circumstances overuse or otherwise physically stress that joint.  At all.  Ever.  For many, many months.

It was actually kind of funny.  My nurse told me I should be careful with my motions and should definitely not be using StairMasters or anything like that (ok, truth is, I've never, ever been on a StairMaster, so that should be easy advice to follow).  She also said the "hope" was that especially because I'm young, the bone would regrow and fill in where the cancer destroyed it.

My Radiation Oncologist told me that I absolutely must rest it because the bones will be very fragile for a long while.  I then asked my Radiation Oncologist if I could bike (While I don't have a StairMaster, I do have a bike.  Plus it's getting nice out.  Plus I generally think of biking as the non-impact exercise that isn't actually boring.)

That was, apparently, not the right thing to ask.  The shock was quite visible when she asked me, "You haven't been biking, have you?!?" in pretty much the same way you would say something like, "Please tell me you aren't really covering yourself in gasoline and then smoking cigarettes," (don't worry, I'm not) or, "Oh, dear, you haven't been wearing a deer costume to wander through the woods on the first day of hunting season again!" (don't worry, I haven't).

Truthfully, I haven't been biking at all, which is good, apparently.  I've actually been feeling bad that I'm not getting more exercise these days since I've been feeling better and I keep reading these stupid Twitter tweets from Dana Farbar about all the fabulous things people are doing to reduce their risk of cancer with a heavy emphasis on exercise (this morning I learned  from @DanaFarber: "Inactive women are at a higher risk of developing breast cancer, and women who exercise after #breastcancer have better survival." #SFSCWC, while yesterday I found out from @DanaFarber: "Dana Farber intern Alina finds her #WayToWellness by tap dancing. http://t.co/ow4WVlmhBj.").

I'd feel a lot better to be "off the hook" if I didn't feel quite so much like it was dooming me to poor outcomes.  But, as it sounds like my hip may be prematurely returning to ashes and dust (not literally, I'm just a little bitter and bitterness makes me melancholy.  Plus I like the sound of it.  And I went to Dana Farber on Ash Wednesday.)  

So, no tap-dancing, StairMastering, or biking for me in the near future.  But at least I haven't broken anything yet, so that's a blessing.

Now I just need to go unfollow organizations that send out cherpy wellness tweets that tend to depress me, at least for the next few months.

Waking the Sleeping Giant

Goya - Sleeping Giant

I try not to dwell too much on how this cancer developed.

I keep hearing how looking back and assigning blame doesn't help much, and I'm sure that's true.  I mean, even if I had knowingly and willfully doused myself in carcinogens in my younger days, once the cancer's there it's there and there are no points granted for good behavior.

But I also know full well that part of the reason I can put guilt out of my head is almost certainly because I was blessed with the luxury of not happening to be able to point to any of the avoidable risk factors for breast cancer in my past. I don't think women who have should blame themselves, either--hindsight is always 20/20--but I know it eases my mind to not be able to identify anything that I could say, "Why didn't I just ___?" about and believe it would have made a difference.

I don't have a family history, I ate well, exercised, kept a good weight most of the time (there was about a year when I bumped up into the "overweight" category but I'm not going to pin all of this on that one stupid year), all the things you're supposed to do.  I don't have either of the BRCA mutations. I went through all my stage III treatments, took vitamin D, refilled my tamoxifen prescription before I was out and took it as directed. Every single day.

I even had a "clean" mammogram 6 months before my diagnosis (of course, we weren't talking about density in 2012, and I have no idea if it would have mattered or not. But probably not because in the world of breast cancer, 6 months isn't that long, even at grade 3).  And still here I am.

And unfortunately for the world, my blessing of not feeling like I have to blame myself is, for the rest of the world, kind of a curse.  What I mean is, if you could just point to something and say, "that's what happened, that why she got cancer, that's why it's back," then you might be able to say, "that's why it won't happen to me."  And, unfortunately for everyone else in the world, that's not the case.

All kinds of women at all ages from all kinds of locations and all walks of life end up here.

And I'm sorry about that. I really am. I wish I could tell everyone in the world that they don't have to worry (not that I actually want to blame myself, either, of course). And the truth is I can't.

The same thing works the other way, too. There are women who live for decades with metastatic breast cancer. Lots of them. And there are also women who don't. At my Dana Farber appointment, the oncologist there ran through some things that bode well for my future survival (ER+, bone only, not so agressive that it was everywhere at diagnosis) and some that were possible signs of worry (tamoxifen resistance, less than 2 years to mets), but the truth is, despite good signs and bad signs (and more good signs than bad signs), there is no way to know for sure what will happen until it happens. And so I keep listening to people who know as much as anyone knows and keep doing the best I can. But, despite fervently wishing for it, there's no guarantee (well, ok, let's be real, I really only want a guarantee if it's positive, anyway).

I try not to worry too much about the things I can't control.  If nothing else, I don't want to spend my time as a freaked out mess any more than can help.  And I try really hard not to worry about things I can't control.  That goes for reasons why this happened to me and and reasons why I may or may not have a good run at stage IV.

Sometimes I'm good at not worrying and sometimes I'm pretty bad at it.  Clearly, at least for me, sometimes it's easier said than done (as you can tell by just reading back a few posts on this blog).

I don't know what woke the "sleeping giant" that is cancer in my own body and I don't know for sure what it will take to slay it or at least lull it back to sleep.

And so, while I certainly hope the best modern medicine has to offer does it the trick, both for me and the thousands of other women looking at this kind of diagnosis, I'm trying really hard to live in the moment and leave the rest to God, whatever "the rest" turns out to be.

Standing on the Shoulders of Giants: me (plus clinical trials)

I laugh with my kids about how the internet revolutionized our lives.  When I was younger, we used to argue about facts on and off for years.   My kids argue briefly and let Google figure it out.  Doesn't really cut down on the arguing, but at least they put an issue to rest and move on to another fairly quickly these days.

I don't remember much from 8th grade science class.  To be honest, I don't even remember what branch of science it was focused on and, while I can see his face, I don't remember my teacher's name.  What I do remember is a single quote our teacher attributed to a modern scientist accepting some big science prize--possibly a Nobel, but I don't remember for sure.  While accepting the prize, the scientist said, "I am merely standing on the shoulders of giants."

I've tried to find out who it was, but Google gives me lots about ancient legends and Sir Isaac Newton and nothing (or nothing I have the patience to wade through right now) about modern scientific prize winners.  Perhaps I'm remembering wrong, perhaps it never really happened (that was another hazard of the time before internet, urban legends had much longer legs), but I still love that quote.  

So much the we have is built on the work of those who came before us.  Cancer fighting techniques and my odds of staying alive are no exception.

There's a blogger who writes about science and medicine who's written the clearest explanation I've seen about the process of developing the knowledge that is our current treatment for breast cancer here.  The knowledge gained is impressive, but as impressive, to me at least, is the number of women over decades of time who were willing to be part of these trials and help provide better treatment for those of us who would follow.  I am profoundly grateful to them.  

It isn't an understatement to say I likely owe them my life.  For my cancer, they estimate the chemo regime I had offers me a 32% increase in survival odds (32 out of 100 more women will be alive because they had the chemo regime). 

Good trials require a lot of things, but one of the biggest requirements is a large enough number of participants to see what's due to the treatment difference.

I think about it this way: I'm having pain in my hip.  It could be I injured it exercising.  It could be the tamoxifen.  It could be a genetic predisposition to hip weakness.  It could be wear and tear from my years as a cross country and distance track runner.  It could also be bad shoes.

So, at my doctor's suggestion, I've been resting it and taking Advil.  It's a bit better now.  I'm assuming it's the rest and Advil that are helping, but I have no way of knowing if it could really be better because I haven't been wearing athletic shoes or because the leaf mold has put me back on my allergy pills and they help or because I'm eating food with more or less of a certain vitamin or mineral over the last 2 weeks, or something else entirely that I'm not even thinking of.

I'm one person with all kinds of things I do every day, so who the heck knows which it was?

But, if someone who knows a lot more than I do about joints and allergy pills sees a way allergy pills might, say lubricate joints...  Or if someone looks at records for people who take these pills and notices there seems to be a trend of less hip pain...  That's a great time to set up a trial and see.

With enough people involved, the different little things we each do (wear sneakers, eat a lot of berries, stretch after exercise or don't) have a much smaller impact on the whole and by looking at lots of people with hip pain and giving them either the allergy pill or a sugar pill, we can get a much clearer picture of whether the allergy pill makes any difference or not.

As a cancer patient, I probably hear more than my share of stories about people who did x, y, or z and are now cancer free (in my life, these come from a place of love and a desire to help me, so I'm thankful for that).  As a cancer patient, I also have been through times where I have been very sad and very frightened and want to do something to make it better, so there have been times when I've been pretty "ripe for the picking" about ideas that might help me.

But the thing is, while you may have heard of someone who had cancer and drank 10 cups of organic juice every day and are cancer free to this day, that's not really proof that the juice helped.

Maybe it did, but maybe all the cancer was removed by surgery or the first doses of chemo the person did prior to giving it up and juicing.  Maybe it was something else the person did but isn't thinking to mention, like hit menopause, lost weight, or stopped using goodness knows what.  Maybe that person is one of the lucky few who were on the right side of the odds--even a cancer that will kill 95% within 5 years still has 5% who don't die, and someone has to be in that 5%, right?

Goodness knows cancer sucks and I, as much as anyone, want to believe in things that will help.  But so-and-so who did something and is better doesn't tell me anything, really.

Maybe it doesn't hurt to add whatever so and so did into the mix if it's harmless, but if its something with the potential to do harm, either by itself or because of what you give up to do it, well, I don't want my life to be hanging in the balance.

So that's where the clinical trials come in.   When enough men and women sign up and people track carefully, then we know.  And, for me, that's how we know my dose dense ACT chemo regime works better than AC alone which works better than the earlier chemo regimes which works better than no chemo.

Maybe I'd be one of the lucky few who would have lived anyway, but the stakes are high and the odds aren't good.

And so I truly believe I stand here today by the grace of God, medical people, and thousands of men and women who cared and paid it forward.

(and yes, I am in a trial myself--to my kids and their generation: hope it helps!)

Post 2, in which I live to fight another day

Saying, "Thank you, God!" a lot over the past few days.  My hip is irritated and has some inflammation but does not have any apparent cancer.  Thank you, God!

So, I remain stage IIIa and continue on my current path of tamoxifen (an estrogen blocker because my particular cancer feeds on estrogen) and efforts at healthy eating, with a little break from my efforts at getting enough exercise in a attempt to rest the hip.

A recurrence scare is (obviously!) no fun.  It's terrifying for me and terrifying for my family.  But, in a strange way, I think it has a weird bright side--it forces me to face the possibility of progressing to stage IV and helps renew my determination to do what I can to prevent that.

To be very clear, especially to anyone whose view of breast cancer is mainly happy partying women in pink tiaras, tutus, and boas, all the early detection and treatment in the world can not prevent all breast cancers from progressing.  Plus, we can determine the odds that the cancer will return, but we can't determine WHO will be free of progression and WHO will die of this.

Let me repeat that, all the early detection and treatment in the world can not prevent all breast cancers from progressing.  We can determine the odds that the cancer will return, but we can't determine WHO will be free of progression and WHO will die of this.

The rearview mirror is shiny clean, but the windshield is pretty cloudy.

But there are things that studies have shown statistically decrease the odds of moving to stage IV, and those include taking my tamoxifen (which is not without side effects, but better than terminal cancer, at least in my book), eating a healthy diet with lots of fruits and vegetables, maintaining a healthy weight, and getting enough exercise (interestingly enough, that's independent of any weight-loss it may add to).

Since we all know how much fun those non-pill activities can be in practice--let's face it, they sound good, but who really wouldn't rather just eat a cookie and not sweat?--a little renewed focus can be a good thing.

And so I move on, doing the best I can to do what I can and keep on the fine line between being vigilant and careful, and living life without fear.  Or without excessive fear.  Or with occasional excessive fear but not debilitating fear.  And gratitude.  Always gratitude.