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 :)

7 months (or the natural history of breast cancer)

Cancer, chemo, and chocolate chip cookies

I read something interesting this morning.  I was searching for a chart I had seen a while ago and came across an article that included data I hadn't seen before about the "natural history of untreated breast cancer," which, at least in this context, means what happens if you just leave the cancer to do what it does and don't try and stop it.  I guess I don't really need to tell you, but, as it turns out, things don't go well when you do that.

For very obvious reasons, the patients studied for this were diagnosed between 1805 and 1933.  It basically looks at women who had breast cancer before there were treatments for breast cancer.

(On a related note, be aware that the article itself is over 10 years old and a lot has changed in the treatment of metastatic breast cancer in the intervening decade, so I wouldn't actually recommend reading too much into the facts and figures quoted in the rest of the article any more than I would recommend going right now to Blockbusters so you can rent that great new movie Moulin Rouge! on VHS to keep you busy while waiting for book 5 of the Harry Potter series to come out.  Especially because the stats reported on in the article were from a time when Tupac was alive and Friends was a new show on TV.)

But anyway, I had read some time ago that untreated breast cancer patients had a median survival of about 2.5 years from the time the lump was discovered to eventual death.  Turns out it's actually 2.7 years and this article reports some more figures I didn't know before, including that women with untreated grade 3 breast cancer (the faster growing kind that mine is) lived a median of 22 months--that is, half of them died in less time and half of them survived past that point.  Also, not one of the untreated grade 3 patients was alive 5 years later.

So, I am very happy to report that 22 months from finding the lumps, for me, was last February and, I can assure you, I am still alive.  Go science.  Better living--and just plain being alive--through chemistry is at work in my life.

February, you know, was winter, spring, summer, and newly fall crisp days ago.  Also 41 blog posts of varying degrees of stress, hope, resignation, and silver-lining-searching ago (wouldn't you know it, exactly, to the very day, 22 months after my first biopsy that confirmed my stage III grade 3 cancer, I posted this stressed out little post about my impending stage IV diagnosis.  Which, quite frankly, while a difficult and unpleasant time, was still better than being the day I died.)  And, it was also lots of nice, normal, going about life days ago--which is kind of a miracle given what would have been going on (or not going on) had I been born roughly 80 years before I was.

I have more scans coming up next month that will give us a better idea of what's happening now, but at the moment I feel really good.  And happy.  And definitely not 7 months in the grave.  And for that, and every single anything I've done over the past 7 months (including the stupid things like mopping the floors and playing Plants vs. Zombies, and also the fun things like vacation days, birthday parties, and dying parts of my daughter's and her friend's hair blue, because it all works together to make up a life), I need to thank my surgeons, oncologists, and all the people who brought us some really spiffy advancements in chemotherapy, radiation therapy, and hormonal therapy.

What have you done in the past 7 months that you're glad you didn't miss?

Where did August go?

Ok, it's been a while, hasn't it? Like all of August without a single other post.  And my last post a serious downer, too.

As you could probably tell, in the first part of the month I had some real thinking to do about where I am with this cancer stuff and how I'm dealing with it.  Part of the time has also been spent consciously dialing back on how much I'm focusing on cancer for a little while, reading about it a little less, staying off of online boards a little more, and generally trying to make it a smaller part of my life for a while.  

Which didn't, of course, include making oncology a smaller part of my life--I've been going to my medical appointments, taking my pills, getting in my steps, and doing all the things my oncologist tells me to do.  Because oncology is important.  Also because if I think cancer is tiresome when I am doing well...

But, as it turns out, August 2014 has been very good to me. 

In August I passed One Million Steps mark (at least since I started counting steps).  On that day my husband, daughter, and I walked down to our local gourmet cupcake shop and got a few treats to celebrate.  My lemon-drop cupcake was huge, buttery, and delicious (as it should be!).  I also bought a creamsicle cupcake to have the next day.  Because 1,000,000 is a big number.  And it looked delicious.

Also in August, we celebrated my daughter's 15th birthday.  It was a fun, lovely day with most of her siblings (including her sibling-in-law) here and a nice, low-key celebration the way she wanted. When I was first diagnosed with cancer, she was 12 1/2 years old.  Somehow, the 2.5 years between 12 1/2 and 15 seems like a huge leap, much bigger that 8 1/2 to 11 or 5 1/2 to 8.  I feel very privileged to still be here watching her make these continued steps toward adulthood.  

Cake and jello with family make for a happy birthday

In August, we also met up with my brothers, sister-in-law, nephew, and niece for a fun sibling day at the ocean.  It was a great, relaxing day filled with good food and good company.  With life, kids, and many relatives, I realized on that trip how rare it's been for me to have a conversation with my little brother--he's a good kid who's grown into an excellent grown up, and it was nice to have the chance to talk with him (nice to talk with my sister-in-law and brother, too, but that's not quite as rare).  Also, my daughter adored being the older cousin to the adorable little ones.

View from the beach

In August, my step-daughter was given the opportunity for a few days away from the store she manages to help set up a new store in the next town over from us, which meant she was able to stay with us for a few days while that happened!  It was wonderful to spend time with her for nearly a week of days and it seemed like old times when the kids were younger and had weeks at a time in the summer to visit.  We all did a lot of cooking, a lot of me walking/the sisters running, and whole lot of relaxing and just hanging out.

Grilled pizza--still working on technique, but off to a good start

A silly-fun thing from August: my husband and daughter conspired to create a new cover for the "back to school" issue of a Seventeen magazine (you'll recall I posted recently about the impact that had on my teenage years). It had a photo of me looking every inch the 44 year old I am, with headlines like:

"Kate's 7 tips for a happy and successful school year!"

and

"Fitbit: New secret tips for Champs!"

It definitely brought a smile to my face, and I thought it was very sweet that they read my blog and thought to do something fun with it.

Another thing in August, my daughter and I joined my sister- and brother-in-law who share our moderate obsession with "Dancing with the Stars" for an evening out at "Ballroom with a Twist" featuring Maks and Val Chmerkovskiy,  Karina Smirnoff, and Sharna Burgess.  They were really delightful bantering with each other and the audience, and the dancing was superb.  

Them doing that (here)--how can you go wrong?

What else happened in August?  Do you remember when I blogged about my garden and what the morning glories meant to me, especially when I was sick with cancer treatments in 2012?  Finally in August, the dark blue morning glory bloomed along with the light blue ones--those are my favorite, and I was glad to see it.

Another thing in August, with all the walking, all the treatments, all the benefits of the radiation in the spring--more than once I've actually found myself standing there thinking, "Hey, I feel really good!"  Not just ok for having cancer, but really feeling really good.  I don't know how long I'll be able to hold onto that, but right now it's a real treasure to feel that way.

And finally, not quite August, but last night, my moonflower bloomed.  I had mentioned them briefly in a post caption way back in April.  I love them.  I try to grow them every year.  Some years are charmed enough that I get some blooms, some years aren't.  Turns out 2014 is one of those charmed years.  But I guess I already knew that, didn't I?

Finally

Magic comes with a price

Katie Thamer Treherne - illustration from
A Little Mermaid

Yesterday was not my best day ever.

I had my Faslodex, Xgeva, Lupron last week.  I'd even been upgraded to a 3-month dose of Lupron (1 injection, more medicine, lasts 3 months before needing the next injection), so for my next 2 visits I'm down to only 3 injections (Faslodex is 2 shots per dose).  So that's cool.

But in addition to the usual bruses, aches, and soreness from the various medications, and the physical side effects that are part of their life saving action, I've been noticing for a while that in the days after I get them, there are other side effects as well.

For one thing, they mess with my sleep.  Fortunately my oncologist has other things to help with that.  But, I've also been noticing more recently that they seem to also make it harder for me to be resilient emotionally.  I find myself less able to process stressful words, actions, events, right after I get the shots.  And I don't think that's something my oncologist can help me with.  So yesterday I was feeling that.  And even understanding that there was a chemical contributor, it was still a hard day.

Have you ever noticed that in some children's books magic is treated as a free gift with no-strings-attached, while in many, many others magic always comes with a price?

Mary Poppins is the free gift kind of magic, as she comes flying in out of nowhere to add interest and adventure to the lives of the Banks children.  Even when she flys out again, there's sadness, of course, but no one is the worse for wear, and there's even the promise (in French, in the book version anyway) to return again.

But in many other books and stories, when there's magic there's a bargain to be made, be it some sort of trade, tithe or blowback right from the start, or some sort of later discovered change or enslavement that turns out to come with all that power, or the dawning realization that the power or the situations you created with your magic because you thought they would be so lovely aren't all that lovely after all.

Medicine is kind of like that, too.  Some have side effects so minor that all you really get is win, but others have short or long lists of side effects and, like magic in books, the balance comes in determining if the reason to use the magic/the condition you need to treat with the medicine is worse than the side effects themselves.

I don't really find myself regretting the side effects of my medicines.  Especially after those nice stable scans that I also found out about last week, I'm feeling pretty warm and rosy about those little injectable buggers.  But they do have their price.

It's not as bad as the price of chemo, of course, and one of the biggest reliefs of the good scans is that it means I'm not back on chemo today.  Someday I probably will be (I'm learning to accept that), but I'm plenty happy that that day is not today.  Also, the permanent side effects from my previous chemos are really, really minor and managable, so that's also good.

As I heal up from the side effects of the latest radiation and am able to comfortably go for those 10,000 steps, I don't regreat having done that, either.  It occurs to me often as I go for those walks or tend my growing garden, or even use stairs easily on a regular basis, that those were the reasons I chose to get the hip radiated and here I am doing those thing, just like I wanted! 

But yesterday I wasn't feeling so jubilant.  And lack of jubelation was snowballing.  Among other stressful things to my resilliance-free self, I had not gotten in my 10,000 steps the day before (lots of driving and people over, so not bad reasons, just reasons) and had intended to make up for the missing steps by doing more yesterday.  But the worse I felt about it, the less I was able to just get up and do it, and the more time passed when I hadn't been able to get up and do it, the worse I felt.

Finally, my husband came home from work and I was at a paultry 3000 steps.  Not, necessairly the biggest deal in life, of course, but the walking is a "medicine" whose only real unpleasant side effect is time.  And it's something my oncologist recommended.  And it could help.  And it's something I can do, I can control in as world where the cancer seems to say "I'll do whatever I damn well please and there's nothing you can do to stop me." Which we deal with using "There are some major side effects but we hope it will slow down the cancer whose major side effect is death" medicine.  So getting in the steps feels really important.

And there I was at 3000 steps, failing at something important.  And that, tacked right on to my increasingly long list of other things that weren't being dealt with, seriously stressed my lack of resilience.

The crazy good part of all this is that when my husband came home from work, he suggested we take care of that walk right then and there, just go out and do it.  So, we drove to the local track (yes, we did drive out so we could walk) and together we walked around and around and around that track until we reached the 10,000 step point.

Instead of being a death march, walking with my guy on a summer evening, with other people coming and going and doing their own thing, watching the sky turn golden pink, seeing the birds and bees flit around in the overgrown border of weeds and wildflowers, it felt precious.

And, somehow, wasting the day and pulling it through at the end, against all odds, also felt important.  More important, even, than being virtuous all day and not needing to grab the fat out of the fire would have felt.  I guess it's because life is that way a lot of the time, crappy things happen, or are said, or come up as a consequence of something else, and sometimes resilience is in very short supply.  Yesterday I was coming up short on so many things, but we were still able to make good on a bad day.  It was like, for that day, with his help, the greedy gods of cancer and the dark price of magic were unexpectedly, at the very last minute, actually appeased.

With the work accomplished, we went home.  My husband baked chocolate chip cookies and my Fitbit dashboard called me a "Champ".

And I felt a whole lot better.

Cancer, you're doing it wrong (or, can't please everyone)

Eric Gill -  The Last Judgement

Recently, there was a post in an alumni e-group I subscribe to from someone whose father was just diagnosed with stage IV cancer.  I don't remember they cancer type, but it obviously wasn't good.  Because cancer.

In his shock and grief, one of the things the alumni son worried about was whether his dad was being too optimistic, too naive about his future.  Someone else responded that when her dad had had lower stage cancer, she was concerned because he wasn't optimistic enough.  Other people posted supportive messages about how important optimism is in fighting cancer and that the son should encourage his father to be more optimistic.

I've never been in that son's place (my own parents are in good health and my inlaws are doing pretty well, too).  And I understand that as a loving son, he's worried and looking for perspective, trying to figure out this new landscape and trying to find ways to sort it all out.  Cancer can be a game changer, no lie.  But as a cancer patient, what I tried to say gently was that I don't think the correct level of optimism is up to anyone else to determine.  It belongs to the patient.  No one else.

I believe what I said is true, but even believing it to be true, what I left unsaid is that living up to that truth, protecting your right to react to cancer your own way, can be really hard to do.  People love you and just want to help. A lot of the time the intentions are really good. And in the face of all that helpfulness, not doing what people want you to can feel kind of churlish.

I was raised to be accommodating.  To not rock the boat.  To believe that putting my own feelings ahead of what other people want was selfish.  And sometimes it is.  But cancer is one of those things that knocks your life around.  It asks hard questions.  It gives you awareness that there probably won't be enough time later to do the things you've been putting off and that you may need to lay some groundwork faster than you wanted to and might not get to see how it all works out.  Cancer, after the initial shocks, can be a fairly loud voice telling you to focus on certain things now, while you can.

I'm lucky that my husband is the one most often telling me that it's ok to do things that are important to me, even if they don't meet everyone else's expectations.  That helps a lot.

But, in other contexts, making choices about how I spend my time or how much effort I want to put into things, making choices about the choices I make, choosing to avoid situations that upset me or hurt my feelings, or choosing how I express how I feel even if it's not very optimistic--sometime these kinds of things aren't met with rounds of cheering and applause.  Sometimes people are miffed. Sometimes they think I'm just plain "doing it wrong."  Sometimes they act like I'm "not playing right." Plus, I make my share of actual bad decisions, so sometimes my choices really are dumb and I really am doing it wrong and I probably am "not playing right."  There's all of that rolled together into the experience.

And it can really stink. And it's stressful. And feels a lot like guilt. And sometimes that's not even an accident.

But, making these choices with the time I have (whatever that turns out to be) also feels very, very important.

I understand people have the right to respond however they choose, but I hope they will at least try to be gentle with me.

If you're someone who's miffed or whose expectations I'm not meeting, if it seems to you like I'm doing cancer with the wrong attitude or not being enough of whatever you think I should be, I'm sorry you feel that way, but I hope you try to understand.

I'm doing the best I can to do this in the best way I can.  Which is sometimes hard in ways I know other people may not really even understand.

Which, when you think about it, is probably not even a cancer thing, at all, but mostly just part of being human in the world (possibly a bit amped up by the cancer situation).  Living can be hard.  Dealing with expectations can be hard.  Trying to do the right thing can be hard, even when there's no cancer involved at all.  And I believe there are some some absolutes of right and wrong, but for many things doing it right is really in the eye of the beholder.  But with God's grace I'm trying to keep my eyes clear and focus on the things before me, and, hopefully, put my time towards all good things.  I know I won't always succeed, but at this point I know I really need to try.


P.S.  Don't worry, my top priorities are my husband and the kids in our life, so no major life changes here--I don't want anyone to think this is a manifesto about how I'm about to get all Shirley Valentine on you all;  it isn't, I promise  :)

P.P.S. I'm not really talking about decisions that run counter to medical advice, which I could see being a legitimate concern to people who care about me.  I'm actually a total doobee when it comes to my medical care.

And, final note:  I know I've been posting weirdly introspective posts lately.  Cancer has its ups and downs, but I doubt this blog is going to be this mucky for too long.  At least I hope not.

Come what may

Eeyore doing what Eeyore does best, poor little guy.

Fair warning:  this is a fairly depressing post so you probably don't really want to read it.  Nothing worse is happening yet, but it's a rainy Thursday outside and it's a rainy Thursday kind of post we have here.  There, you've been warned.

My mom asked my yesterday if I was done blogging now that everything is settled.  I took that as a sign that it was probably past time for me to come back here and post something because:

1. I'm not done blogging
2. Nothing is even close to being settled 

So, to address the first one, what have I been doing to keep me away so long if I haven't been blogging?  (a.k.a. my list of plausible excuses):

Well, part of it was Easter and two weekends in a row with real Easter (with one side of my family) followed by we-don't-want-to-miss-Easter-let's-do-more-Easter (with the other side).  I work on workdays and often take the weekend to post and start writing other posts, so half the weekend gone is a decent chunk of blogging time.

Part of it was dealing with some side effects that aren't dangerous but also aren't fun.  And worrying about them.  And reading more about them.  And trying not to worry about them.  And going back to dealing with them.

Part of it was that I'm now a week and a half out of my 5 days a week radiation therapy.  As seems to be my way, I'm usually good in a crisis and super at dealing with hard things when I'm in the middle of them.  It's a gift, I guess.  But it's when it's all over that I usually need a break to sort through and process what the heck just happened to me.  So, here I am trying to sort through and process in my head before working it out on my blog.

Part of it was that between cooking and cleaning and driving and spending time with my family and reading a good book and reading more about cancer and working and taking a day with my daughter and spending more time at the doctor's and getting more injections and writing things that aren't for here, I'm feeling like I haven't had the time to sit down and write here.  

And honestly?  It's that time thing that's got me a little strung up.  Which gets me back to the "nothing is settled" part of this.  

Metastatic Breast Cancer is cancer for life.  I will have cancer and be in treatment for the rest of my life.  And no one knows if I'll respond to my current treatment or the next one or the one after that.  And no one knows how long any treatment that does work will continue to work because they all will fail at one point and we'll have to move on to something else until there isn't anything else.  And they start out with treatments that have manageable side effects, but as those fail, they will need to start moving to things that are hard.  Which is not one of the happier things for me to dwell on.

As I've said frequently, I hope the Faslodex works for many years.  And in some people it has worked for many years.  And I hope when it does fail, that the next alternative ready to take it's place will be easy and successful, maybe even something new and very effective.  And I hope the same for what ever I'm on after that one fails.

But I don't have the crystal ball I want so badly.  And lately I've been thinking a lot about what this all means.  But I'm not really ready to write about it.

I hate to be the most depressing person in every room I go in, and I try to remain optimistic and remember that there's hope.  And there is hope.  But if I've given the impression that everything is all set and I just need to keep getting injected so that everything will be fine, then I owe you and every stage IV cancer patient you'll ever meet an apology, because that's a lot of misinformation right there.

I have bone scans and CT scans scheduled in about a month and a half.  Those will be the first signs we have to go by on whether or not the current treatments are working at all.  I'm obviously anxious to find out. 

As it stands, with the treatments and technology we have now, that will be the measure of my life.  It comes down to 3 to 4 month segments.  Treatments then scans then treatments then scans.  And that's how we're proceeding: through the darkness with headlight on, illuminating the path ahead 3 to 4 months at a time.

P.S. I read an article this morning online here about breast cancer "awareness" and research and early detection and metastatic breast cancer and what it all means.  It's not for the faint of heart, maybe, but Ann does her research and makes some solid points.  She also has a blog I follow here.

P.P.S.  Please note, and this is important, I didn't say I only have 3-4 months left or that I only have a few 3-4 month segments left.  I hope to have years and years of them strung together.  What I am saying is that that's how far ahead we see at a time, that's how far the plan extends before we need to go back and check the map and see where we need to go, metaphorically speaking.

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.

Sometimes it's a choice

Picasso - Woman with Folded Arms

When I'm feeling bad, whether it's sad or down or insecure or frightened, nothing makes me feel worse than someone telling me I just need to "choose" to be happy.  I hate that and it really ticks me off.  Plus, it doesn't help at all.  It only makes me feel worse.

But, the truth is, sometimes (not always) I do need to make that choice to go with happiness, even when I don't really feel like it.

Today was one of those days when it had to be a choice.

I was at the medical center this morning.  Normally it's ok, but sometimes it can be a bit of a drag.  So I was there.  Just like I was yesterday.  And the day before that.  As I will be tomorrow.  And the day after that.  And every other weekday for the next 17.  I'm normally just in and out, quickly lined up by my new tattoos and hit with some radiation.  But today I also had some doctors appointments and some ultrasounds and a blood draw, too.

The ultrasounds required fasting.  This is not good because I require breakfast.  And I'm not happy when I don't get it.

Plus, after the ultrasounds, I needed to go to the blood lab.  Usually this is fine because no matter how bad my veins are, the phlebotomists are such pros they're always in and out in one take.

I guess that would be except for today.

The first phlebotomist, to her credit, knew she was out of her depth and called in a more experienced one and that worked fine.  Unfortunately, that was after she went in for what she thought was a vein but, after I jumped and no blood came out, she told me was probably actually a nerve.  Who would have though you could feel nerves from the outside like that?  Who would have thought nerves and veins could feel enough alike?

I do have bad veins, though, and only one good arm to use, so I expect trouble most times, just not in phlebotomy.  But knowing it was a challenge for anyone did absolutely nothing to cheer me up.

At least when that was done I went to the cafeteria for some long awaited breakfast.  I was feeling pretty sorry for myself by now.  And also feeling hungry.

The young thing in line next to me ordered the "Wellness Burrito" with extra spinach.  I did not.  I ordered French toast.  And when I grabbed the imitation syrup, did I take two?  You better bet I did.

I was feeling hungry and cancerous and pretty tired of medical stuff and I was starting to feel like getting some French toast and syrup was the least I could do for myself.

So then I sat with my French toast and syrup with more syrup, downed with some not so good coffee, and took advantage of the free WiFi to read some posts in my favorite breast cancer forum.  And I read some posts from some other women in my same shoes who aren't doing so well.  And read a heart wrenching blog post about something another stage IV woman's young son wrote about her cancer.  And then opened Twitter where I like to follow cancer news and saw a series of photos of a big-time football player with a shiny new Super Bowl ring visiting some very, very sick children.  Sick enough not to seem to know he was even in the room with them.

Now, you might think that I would maybe be valuing how lucky I am to have access to good medical care and insurance so I could have these safe and useful tests and medical expertise to keep me as well as possible, and how lucky I am to be doing so well, and to already have enough improvement from the radiation to be able to move my leg in a way that was previously very painful, and to be able to get breakfast, and WiFi, and have a device to use the WiFi on, and all the gloriously privileged things about my life.

But you would be wrong.

The only thing I was valuing at that moment was the fact that I had double syrup and not the slightest hint of "Wellness Burrito" (with or without extra spinach).  The rest of me just felt very, very sad.

But you know what?

I am lucky to have access to good medical care and insurance so I could have these safe and useful tests and medical expertise to keep me as well as possible.  I am lucky to be doing so well and to already have enough improvement from the radiation to be able to move my leg in a way that was previously very painful.  And I am lucky to be able to get breakfast, and WiFi, and have a device to use the WiFi on, and all the gloriously privileged things about my life.

There have been times in my life where it didn't matter how much I wanted to feel better, it was something outside of myself and I couldn't make it happen on my own.

But today I surprised myself.  For reasons I can't fathom, I was actually able to buck myself up.

I sometimes forget that worrying about things doesn't change them.  Sometimes I feel like if I just worry enough I can ward away bad things (I can't).

I sometimes forget that I believe God is with me.  Sometimes I feel pretty helpless and just on the brink of being swept away.  In my head I know He's with me in good times and bad, but it doesn't always move through to my heart.

I sometimes forget that I actually feel pretty good right now.  Sometimes I worry so much about what could happen if things don't continue to go well that I forget that right now things aren't in that bad place.

Afterward, when I was talking to my radiation oncology nurse about pain, she was telling me why it's important to take what I need to manage the pain.  She was telling me how when your body senses pain, it tightens up in that area and restricts the flow of blood you need to heal.

How's that for a metaphor?

And on very the same day where a phlebotomist mistook my nerves for veins.

Weird how life can throw metaphors at you (or at least weird how I can see a metaphor even in the least metaphor-like things, but it's my blog so let's ignore that for now).

I believe empathy is important.  I believe compassion is part of what makes people good.  I respect that football player for acting on empathy and compassion and taking the time to visit very, very sick kids.

But we also need gratitude, if for no other reason than to help us heal from what can seem like an onslaught of sad news all around us, and gratitude isn't always my strongest suit.  I believe gratitude can come from compassion and empathy, but I don't always get there that easily myself.

But I'm working on it.

The opposite of survivor is...?

I'm not really sure "cancer survivor" fits me any more. Just like when I finished treatments the first time, I was not entirely sure whether to talk about it in present tense ("I have cancer") or past tense ("I had cancer"), now I'm trying to figure out what to call this place I'm presently in.

Technically I'm surviving every day that I draw breath, so literally it still fits.  But it also has some "done and won" connotations that don't fit as well anymore.

So, what then is the opposite of survivor?

According to WordHippo.com the opposite of survivor is casualty.  Contributors at WikiAnswers have it down as victim, fatality, or loser.

Nice.

In the context of language and opposites, I can't take it personally.  Really, I do understand that those answers weren't ever intended to be used in this particular context.

But still, it's kind of funny to think of myself throwing around, "Hi, I'm a cancer victim," or, worse yet, "Hey everyone, I'm a cancer fatality."  I have a feeling something like that would come across very, very badly.  To put it mildly.

"Cancer loser" is at least ridiculous enough to be funny.  Not, I hope, very accurate, but funny.

But, more to the point, I'm not a casualty just yet, thank you very much. Not a fatality, nor a victim.  Yet, on the other hand, unless something even worse happens to me, the expectation is that at some point (and the plan is some very distant point), it is expected that the cancer will someday rise up and take me down with it.

"I'm surviving--for now," isn't the kind of thing I want to say either. Or hear. Or be.  Even if it is technically true, it's dark, with undertones of hopelessness and pessimism.  We may know cancer is likely to someday do the deed, but talking about it like we're expecting it to happen any day now is more than a little depressing and also untrue.

And besides, who among us isn't actually "surviving--for now," when you get down to it. It is part of the human condition, after all.

"Cancer patient" is one of the better choices, I think. It's both technically true and good at avoiding adding that overwrought sense of impending doom that the other phrases do. Or, post-impending doom (fatality and causality, I'm talking to you).

But it also seems like a bit of a cop out, because in cancer-world, the word "survivor" isn't just a statement of whether or not you've survived, it's also your ticket to that special place in the whole survivor culture that runs through all manner of fund raising and celebration.

"Survivor" is a message of hope and a statement about the successes that have been achieved. It's something that encourages people to feel good about donating and personalizes the mission into a cause people can rally around.

Chemicals in a Petri dish?  Not very engaging.  Lots of shiny, happy women grateful to be alive? Much more engaging.

Stage IV can still be a rallying point, but it pushes things out of "successes" and back to the "still more work to be done" category.  If it is still a message of hope, it's one that's a little frayed at the edges and pulled out at the seams.

My husband, daughter, and I did a walk to raise funds for breast cancer programs and research last October (of course October).  It was a good experience for us and nice to feel like we were paying forward some of the care and treatments I had had the year before (and actually, even now knowing how that turned out, it's still nice to feel like we did something to help fix this thing for future generations and help enable discoveries that might help me). I walked out of that walk with a free pin that calls me "survivor" and a soft pink Miss America sash that boldly proclaims me one.  Felt kind of dorky, but also kind of nice. Because I was a symbol of hope on that day.

Chevy and the ACS have teamed up for a initiative in support of cancer survivors (website here) as a follow up to that moving commercial they ran during the Super Bowl (also on the link above).  I even found out cancer survivors get the color purple.  Who knew surviving had its own color? But, (and this is not because anyone else has made me feel excluded, only because of my own muddled feelings on the matter) I feel like it isn't really my team anymore. Or maybe like it is my team, but I'm cheering from the sidelines after having been benched for poor performance.

I guess I have a new team now.  The "living with metastatic disease" team.  And the plan is for the emphasis to remain on the "living" part of that.

I'm finding there is sometimes an undercurrent of "they want to forget we exist" from some metastatic patients in the stage IV world, but I'm happy to report that I haven't witnessed anything like that myself.  I hope I never do.

Besides, as I sit here and type this, I'm wearing the pink breast cancer awareness Under Armor Wonder Woman t-shirt one of my stepsons and his wife gave me and my daughter for my birthday.  It's the shirt that I wore on that cancer walk. Unlike the "survivor" sash that sits hidden away in a box, too symbolic to throw away, too awkward to use, I wear this t-shirt as often as I can.

As I've said before, I obviously don't have much in common with Wonder Woman herself, but I love this shirt. I love the image of strength, I love the people who gave it to me, I love the people who walked with me and the people who donated to our walk, I love the memories I have of watching the Wonder Woman TV show in the '70's with my parents and big brother (accurately called survivor himself--go bro!  My little brother I also love, but he was just a baby back then and didn't watch TV), pretending I could spin around and turn from the me version of Diana Prince into everyone's version of the awesomeness that is Wonder Woman, and watching those shows again as an adult and sharing the joy with my daughter and husband.

Under Armor's breast cancer campaign is one I like. It features real life woman and their stories and, as far as I can tell, raises real money for real research (not all pink goods do). But the reason I like the shirt is that it reminds me of some of the best parts of living, my husband, daughter, stepkids and stepdaughter-in-law, my family and friends, old memories and new ones.

And the good parts are still the good parts, whether I'm "living," a "survivor," "living with metastatic disease," or predending to be the awesomeness that is Wonder Woman.

Take that, "cancer loser" moniker, take that.

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.

A little bit of surgery

I had a little bit of surgery today.  Some scar revision ("dog ears" and something I'm just going to call "one big step towards looking like a human"--I think my fellow BC patients and friends of BC patients will guess what I mean, anyone else who stumbles upon this blog and doesn't understand really doesn't need to.  And I'm certainly not planning to add to their ranks by adding dubious Google terms!

I've come to the point where walk in day surgery has become no big deal, but at the same time, I surprised myself over the past couple of days when I suddenly realized I was really anxious.  Hard to explain how I could feel both at once, but I sure did.

I wasn't really anxious about the procedure itself, but more about messing up my current run of fairly smooth healing and what I consider stellar results.  My plastic surgeon is, I have discovered after my first surgery, extremely gifted. 

I don't live my life in regrets, but I guess if I think on it, I actually do tend to live my life trying to avoid being regretful.  Which actually, when I put it down in words, sounds like one of those slogans that pop up on Facebook and get written in pretty script on walls and wood blocks.  But in real life, or at least in my real life, it tends to be more like, "be really, really careful and don't wish you still had whatever it is you just messed up."

And that, I think, isn't really print-it-on-a-block material!

So here I was with results I was very pleased with and could have lived happily with, at least as far as they went. and going in for the next step, and praying I didn't end up praying to be back to before (well, not really "before" because that's how I tend to think about pre-cancer, but you know what I mean).

But at the same time, I've discovered that it's really important to me to look more like I consider human being more of the time (not judging people who make other choices but this is mine, should also add that my husband couldn't care less).

And the really weird thing?  I'm all wrapped up for 2 weeks and can't even shower, much less see the results (which is really cute given all the surgical magic marker that covers me even under the clear plastic bandage pieces!).  And yet I feel better.  Much better.

I attribute that to two things:

1) My husband, who is exactly the kind of guy you want by your side when the going gets rough.  He was raised with a strong sense of the importance of doing what needs to be done (He emptied my JP drains twice a day the entire time they were in after the mastectomy.  He-man is all well and good, but give me a man who sticks by my side through sickness and health with love and compassion and I feel like that's a win.)

2) My surgeon coming in with his magic marker and carefully studying the placement of things.  His attention to detail and calm confidence helped me remember how it was with the first step.  I guess a little of that confidence wore off.

(Actually, seeing myself type these things, I may also have to attribute it to this morning's anesthesia.  They told me to avoid making decisions.  Seemed a little melodramatic but objectively I may be just a little bit off kilter at the moment so maybe there's more to it?)

So now, I'm trying to see if I can get away with Tylenol instead of opiates (I get very nausious and have headaches, but so far so good!), wrapped up in post-surgical bindings like the bastard child of Scarlett O'Hara and King Tut, and feeling pretty darn glad to have that over with.

Here's to a nice long life of looking more and more like the human I am!

(Now I hit publish and wonder how this post will seem to me when the anesthesia is fully worn off?)

Legacy

My cousin had a baby, her first child.  We're very excited for the new parents and wish we lived closer and could meet the little guy in person.  Instead, I have to settle for looking at pictures from the new family and making a baby blanket to send to them.

The blanket was a no-brainer, really, because our grandmother was an avid crocheter and had she still been alive, there is no question but that she would have made blankets and layettes and other assorted crocheted gifts for her 4th grandchild, the 3rd born after her passing.

As it is, I'm the only one who had nearness and interest enough to learn to crochet from her and I was given her collection of crochet hooks when she passed away.  The blanket, of course, is being made with one of her hooks.  As it should be.

Crochet was part of her legacy to me and the blanket, I hope, will be part of my legacy to my cousin and her family.

With cancer comes a tighter focus on what will happen when I die.  I hope it won't come for a good long time, but I know that it may well be sooner than I would have previously thought.

Legacy is a complicated thing.  My grandmother was a complicated person (aren't we all) and she wasn't universally loved.  Most of her family was more willing, I think, to cherish the good and deal with the bad.  That was definitely true for me.

There are 3 things I remember most strongly about my grandmother: her crocheting, her pie making, and the way she would regularly hold my arm and tell me, "You were always a good baby," well into my adulthood.  The first two, I suspect, she understood would be part of her legacy.   The last one, probably not.

But the baby stories I'm usually told are not the "good baby" kind.  My mother (her daughter in law) talks about how I cried incessantly for the first 3 months of my life and she felt so helpless and miserable, how I was jaundiced and the doctor told her, "that baby is a carrot!" and she had to stop nursing me earlier than she wanted, how when I finally smiled she was so surprised because she really wasn't sure I would ever smile at all.  It wasn't until I had my own daughter that I began to wonder about how the helpless, little newborn me ended up being cast as the villain in her own baby stories.

Maybe my grandmother knew these were the kinds of stories I had and wanted to be comforting.  Perhaps it's just that she lived far enough away not to understand how rough I (unintentionally!) made it for everyone.  Or maybe she just was more willing to cherish the good and deal with the bad and thought I was a really good baby.  Maybe it was just one of those things like a nickname or a catchphrase that just became a habit.  However it was, that small detail, that tiny but regular comment lives on to me as part of her legacy.

I wonder what will live on about me when I'm gone.  I hope it will be some nice things, like my cooking and the costumes and clothes I made for my daughter and all her dolls.  I understand it will probably be negative things, too, like how I never finished that cross-stitch Christmas stocking or how I hated to talk on the phone and would go to great lengths to avoid it.  And, most likely, it will also be those little things, those "always a good baby" moments that I never even considered thinking of as legacy.

I guess now that cancer treatment has bought me some time, I am more conscious of what may be remembered about me.  It crossed my mind when I made my adorable nephew a Halloween costume this year, will I end up being, "you remember Aunt Kate, the one who made you that costume"?  It crosses my mind as I make the blanket for the new baby, as I make another batch of the chocolate-chip muffins my husband and daughter like, as my daughter and I geek out over the upcoming Hobbit movie.  It's not, thankfully, the focus of what I do, and it's not the reason I do things, but it's often there in the back of my mind.

My father always "slips" a little bit of cash to my daughter when he sees her.  It's something his grandparents used to do for him and he likes to pass that on.  I never met the grandparents of his who did that, so their legacy to me is small and only tied to the things my father and grandfather told me.  In another couple of generations, their memory will be gone, I guess, but maybe my daughter's daughter will still be slipping a little cash to the grandkids.  For that matter, maybe it's been going on for a hundred generations by now.

John Green's excellent (fiction) book The Fault in Our Stars focuses on legacy.  It's about some teens with cancer, one of them wishes to make a grand gesture so that his life has meaning while the other tries to live carefully with as little impact as possible to minimize the pain when she's gone.  I guess I am more of the grand gesture type, perhaps with less emphasis on the "grand"--I'd be happy to be remembered for everyday kindnesses, but I would like to be remembered.

Although, of course, I hope I won't have to be remembered for a good long time.  At least not until I have the chance to make blankets for the grandchildren and tell them all that they were always very good babies.

I'm Thankful For...

Wishing you all a happy Thanksgiving.

I joyfully spent the day cooking a big turkey dinner, eating pie, and talking and laughing with family and a friend.  All in all my idea of the perfect Thanksgiving.

Last year at Thanksgiving, I had just finished chemo a few weeks before and was getting ready to start radiation therapy just after the holiday.  I was bald and bewigged, but still surrounded by family and friends--one of the many things I was thankful for that year, too--but sick and tired of dealing with cancer and everything that entails.

This year, thankful for the clear scans I've had since then, the hair that has grown back and the cancer that hasn't, and absolutely thankful for being done with surgery, chemo, and rads, and, of course, still being alive.

I've definitely had some annoyances thanks to cancer, I won't lie, and sometimes they really tick me off.  I have lymphedema and wear a sleeve and glove every day, I have pain in my back and hip that are apparently not cancer and may be unrelated to the treatments but the timing makes me wonder, and I have some "chemo fog" that worries me a lot.

But I also believe that with locally advanced and fast growing cancer, the discovery and treatment absolutely saved my life.  I've read that the median survival time for untreated breast cancer (discovered by lumps not mammography, the date is, understandably, quite old since very, very few people choose not to treat cancer, fortunately, now that we have good treatments) is 2.7 years (if you're checking out the link, scroll down a bit for the 2.7 part).  If I were right at the median I'd have one year left by now, assuming I didn't end up below average, which may be a more reasonable assumption given the fast-growing grade 3 nature of the cancer.  I guess that will make next Thanksgiving my own celebration of the 2.7 mark, which will be very sweet, indeed.  A little ghoulish, maybe, but it works for me.

I try to focus on the good, not the troubles, because it makes me happier to do that.  And the very best of the good is that I'm alive.  Alive to see my family, alive to cook and talk and laugh, alive to avoid "Black Friday" shopping, alive to eat too much pie and wonder if breakfast of sweet potatoes is a good idea.  Just plain alive.

Wishing you all so lovely things to be thankful for this year, too (or at least enough lovely things to overshadow the ones that tick you off!).

A normal life

Cancer takes a lot of time.

From diagnosis to the end of radiation was 9 months.  Followed by follow-up visits with the breast surgeon, the medical oncologist, the radiation oncologist, the plastic surgeon.  Also the nurse manager for the clinical trial I'm in.  Then a few months off.  Then the next round of follow-ups.

In between that there have been scans and visits to discuss the scans for the worrisome symptoms I've had.

And in between that, there was the lymphedema diagnosis and visits with a physical therapist to get it under control.

And, in between all that there is the usual family and work and life.

But today, I am just grateful.  My daughter is hanging out with friends and then getting together for a for a club she's in and basically doing things that don't revolve around me and cancer.  My husband and I are discussing Thanksgiving and what to do instead of smoking a turkey on the grill because the weather will be too cold to want to spend the time outdoors.  The dishes need washing and I have laundry to fold.  Library books to return.  Shopping lists to make and groceries to buy.   Life is gloriously normal.

It's exactly the kind of life I dreamed of when I was going through the cancer stuff.  It was the goal that kept me going when I was sick of surgical drains, sick of chemo or sick of driving daily for radiation.  

I'm not the kind of person who likes a lot of attention in real life.  Cancer was hard in that way--I don't like to stick out or call attention to myself and having cancer makes that a lot harder to manage.

On the other hand, although I don't like to handle attention, I also don't like to have people minimize what the cancer was.  I hate talking about it, but inside I somehow also don't want anyone to forget about it (well, formerly inside, now everyone on the internet can know how I feel!).  So that gets weird sometimes.

I don't know for sure, but I suspect it's very normal.  And if not, I'm still ok with it, right now, at least.  If it gives me trouble later on, I may be less ok with it, but my guess is it's a reasonable part of moving forward.

I'm not likely to ever be the kind of person who says that "cancer made me a better person" or "I am so grateful for the cancer."  For the record, I am not grateful for cancer.  I hate cancer like a son of a bitch.  Really.  I do.

But, I do think it did change me in some ways, and I think part of my struggle with wanting the ordeal understood and not wanting to ever let on about the ordeal is recognizing that it has changed me in ways that aren't as obvious as my "pixie" haircut and lymphedema glove and sleeve.

I hope to get a little better at reconciling the two as time goes on and I think that the act of writing about it might help.

And for now, while I enjoyed order and normalcy before cancer, I find it even more satisfying these days.  It's a relief to be back to it.  Cancer took and continues to take time from me on an ongoing basis, irrespective of whatever time it may or may not shave off the end.  But, while it changed some things, it didn't change everything.

When I was in the thick of treatments, a return to my regular life was one of the big things I held on to as my prize for getting through it all.  Now that it's here, it is pretty darn good.  Even the "new me" thinks so.

(And, not to worry, I'm not sure what's next for posting, but I'm pretty sure if nothing else, it will be less introspective than the last few posts, I promise!)

Why write?

My husband told me yesterday that my blog actually surprised him a bit.  I talk about cancer (some) and we're both very aware (of course) of what happened and what could have happened and what could still happen, but I tend to think about these things a lot when I'm driving or when the house is quiet, so it turns out he was unaware of how much and how deeply I still think about some of the issues surrounding my cancer.

I've heard people say that the aftermath of cancer for survivors is, or can be, like PTSD.  For me and my experience, that's a little too over the top--based on my experience alone, it feels disrespectful of soldiers and people who have been through disasters and struggle with PTSD, but I can't claim to speak for every woman or understand every survivor's experience, and I'm willing to believe it could be that way for some people.  But, even though I have reservations about PTSD here, I think there is a kernel of truth in that even when the cancer is dealt with, the experience does tend to stay in your head, and that can be difficult.

Part of what I'm trying to do with my blogging is work through some of the issues, put down what's swimming around in my head and force myself to not just think about it but think it through--putting it down "on paper" helps me gather up the snarled thoughts and ideas and give them some order, work them out and then really look at them in a way that's clearer in print than it was when they were free to zing about pell-mell inside my head.

Another thing I'm hoping to do is put some of this to rest and clear some space in my head for other things.  I like to write and not that long ago I was going great guns writing stories that had nothing at all to do with cancer.  But since the last two metastasis scares, it's felt all but impossible to just sit down and work on writing anything vaguely creative.  Heck, right now it's even hard to get myself to sit down and read a book, and I like to read.   The worst thing is that I've been working on a story that my daughter is particularly interested in and each time I'm afraid the cancer is back, one of the sad things that goes through my mind is, "Will I even have the time to finish that story or will I leave my baby girl motherless and never knowing how it ends?" (Yes, my internal voice is that much over the top).  And yet, even though the crisis has again passed, I'm still having the worst time settling down to focus on writing.  I haven't put a single word to a single piece of fiction in months.  And that upsets me.  I'm hoping that by putting some of these cancer thoughts down here, my mind will be able to escape cancer thoughts a little bit more and make some room for other things.

Picasso's version of Don Quixote

Another reason I'm writing this is that in real life, I hate to upset people and arguing my points tends to upset me.  But this little piece of blog is my own so I feel a bit freer to say things that could possibly inspire battle lines to be drawn.  Also, sometimes I read things about cancer that I would really like to preach on, but I know my going off full tilt Don Quixote-style (a.k.a. you're going down, windmills) to make my point isn't actually going to do much but upset me and (usually) convince the other person to write me off.  But this is my blog and my space and it's a place I can send my ranting out into the universe.  If my posts come across as preachy, my apologies, it's just that some of what I write comes from things I preach about in my own head--gosh, that doesn't sound whacked out at all, does it?

My final reason for blogging is that I think sharing my story may be useful or even interesting for other women in these shoes.  When I found out I had cancer, one of the things that helped me get through it was reading some blogs from others who'd been there, done that.  Even when I disagree with some of what a blogger writes, I find it interesting to see how other people think and clarify why I feel the way I do (or at least it's that way after I get over my inner, "How can you think that way?"--see preaching, above).  I'm not a much of a joiner and, especially when cancer was hogging so much of my time, I most times prefer a nice evening at home with my family than attending meetings or groups.  I never went to a "Look Good Feel Better" session and I've never attended a support group, but reading forums and blogs gave me a connection that I needed, but in a way that fit myself and my life.

I read an article a few months ago in Johns Hopkins Breast Cancer Journal from September, called Chronicling Cancer Experience Online Can Reduce Depressive Symptoms in Breast Cancer Patients and it's interesting to me because they talk about blogging and connecting electronically and how women with breast cancer who did that had lower rates of depression.  Not sure I would have guessed that, exactly, but I think it makes sense and in some ways, when you get down to it, that's part of why I've started doing this.

I'm finding blogging a good thing and I have so many topics I want to write on, so right now I'm really dedicated to it.  However, I feel like I should issue fair warning that I do have a long and storied history of starting projects guns blazing and then running out of steam.  I don't feel like that right now, but I know it may come to that at some point--I hope not, but that's something I see in myself from time to time.  Or, I may come to a time when I've said all I need to say and I just want to move a few steps away from the cancer again.  In some ways I hope that does happen eventually, moving on would be a positive sign.  But if this blog can do the work I need it to before than, I'll still consider it time well spent, and I hope you will, too.

Thank you for being my reader and joining my on this journey.

I am not the brave person you're looking for

I have strange mixed feelings about the Pink Glove Dance contest.  Most of the videos get me all choked up (ok, I'm a sucker for high school bands, children, sports teams, happy crowds, and I cry at movies, songs, books, commercials, St Jude mailings, graduations, people talking about graduations....you get the picture), but at the same time I see the videos and I can't for the life of me figure out what the goal is with respect to ending cancer.

I may post more about that at some point, but the thing that brought it to mind today is number of videos that chose (from the set choices) Sara Barellies' "Brave" as their music.  Bravery in the face of cancer is so common it's moved well into the area of total cliché.  

For me, the thing is, I'm just not that brave.

If I had the choice, I would not have chosen this fight.  Not unless there was some super life and death reason hanging over my head.  And even then I would most likely fight like hell if there was a way to get out of it (Trust me.  I tried.  There wasn't).

I went through surgery because it was a life or death choice.  Same with chemo.  Same with radiation therapy.  Same with tamoxifen.

I just didn't really have any better choices.

And if I seemed stoic, it was mostly because I didn't want to frighten my family.  And if I seemed positive, it was mostly because I hate to be the most depressing person in the room.  

Sometimes, I guess, "resigned to my treatment" and "brave" can look a lot alike.  Apparently "compliant" can, too. 

I got a lot of comforting words about how brave I was, and while I dearly appreciate the love and kind wishes (really, they were incredibly helpful during a difficult time), the "brave" makes me feel like an impostor.  Now that I'm through with it, people tell me how proud they are and how amazing I am to have made it through this--do I love the image of myself as this totally awesome butt kicker?  Well, of course I do!  But my doctors, nurses, and technologists are amazing.  I pretty much just did what I was told.

Lately, I've been wondering if all this full-on "brave" doesn't make it harder for people in the hard parts of this cancer journey than it should be (it's inherently pretty hard as it is, after all).  There are, unfortunately, always new faces on the cancer forum I like to read, and the common theme is fear.  Fear of dying, fear of suffering, fear of losing the parts of life they care about.  "I'm devastated."  "I don't know if I can do this."  "I'm really worried."  "I'm so scared."  And, like most survivors, I know too well what they mean.

The brave stuff is kind of like that video of the doctor dancing before her double mastectomy that was all over the news a week or so ago.  For the woman herself, hey, if that's what she wanted I'm glad she got it.  But from an all-over-the-news-and-internet standpoint, it sets a pretty lousy precedent.

Most women who find out they have cancer are frightened, not instantly transformed into an army of pink-clad Boudicas jumping up ready to slay this cancer beast.  Most women about to undergo a mastectomy don't feel like dancing, and don't want to dance (ask me how I know).  Not that you can't be that if you want to (although, frankly, pink-clad Boudicas may not translate so well into real life), but, goodness knows, no one should expect that of you and you absolutely don't need to expect that of yourself.  Most women going through testing, surgery, chemo and radiation are just trying to keep going until it's over.   And, know what?  Feeling frightened, anxious, and like you're just barely hanging by a thread and barely getting through is perfectly alright.  And I think the vast majority of "brave" survivors you see felt exactly the same way.

There was one Pink Glove Dance video that kind of spoke to me.  In between the usual waving gloves and happy sashed dancers, there were messages from women who survived and acknowledgement that not everyone does survive (something that's missing in a lot of the super-survivor pink parties).  And the messages were individual responses to "Brave is..."   The one I liked?  "Brave is Surviving."  Maybe if we're going to call people like me brave, it's a good idea to define the terms.   And to me, "Brave is Surviving" is a good addition to the definition.  Not the only thing that counts as brave, but a good thing to have be part of it.

If you have cancer, you don't have to embrace the cancer experience or be empowered by it, and I like to think that brave could also include just getting through one day at a time because you don't really have a better choice.  Because most days, that's really what it's like, but one day at a time will get you through a lot of tough days.  

I'm still not sure I can identify with "brave" but "surviving" works for me.

Plus, the other thing that video had was high school teams and children laughing--and who doesn't like that?