An Ordinary Day

The quilt one of my sisters-in-law made for me
because she is both kind and talented.

Yesterday was a very ordinary day.  Which made it something remarkable and something worth celebrating.  It was finally a day with cancer that wasn't about cancer.

It was a Saturday, which meant I didn't have radiation therapy.  Which also meant I didn't have any other medical appointments.  Which meant I didn't have to see anyone in any form of scrubs or lab coats at all, all day long.  Cool.

I am, of course, very grateful for the people in scrubs and lab coats who are working hard to keep me alive using their collective hard earned skills and knowledge, and I'm blessed to be able to say I'm always treated with kindness by them.  But, still, it's darn nice to have a day without medical visits.  Darn nice.

So what did I do instead?

I cooked breakfast.  I helped my daughter get ready for sports practice.  I went with one of my sisters-in-law to pick up my daughter and we all went to a quilt show.  We enjoyed the quilts.  We went out to lunch.  All 3 of us laughed and had a good time.  I popped popcorn and my daughter and I watched a movie together. I drove my daughter over to her grown-up sister's place so they could have some fun together (and you can bet they will, they're both really special people (I'm totally biased, but that doesn't make it any less true) and that's what they do when they're together) and on the way there my daughter and I had a good talk about cancer and life and some of all that's going on, which was both a good and important conversation to have. When I got home, my husband had bought me a dozen roses just because.  Lots of great things packed into that one day.

The day was helped along by great people, of course, but also because yesterday, my injection sites were feeling better, the Faslodex/Xgeva soreness and stomach pains were wearing off, and the radiated hip let me walk up, down, and all around with only occasional and very mild twinges.  I am probably still more emotional than usual, but the shock is more behind me now and I'm feeling pretty balanced, all things considered.

Which means yesterday was just a day of normal-person stuff.  Maybe more than I usually pack into one day, but more to the point, a day not about cancer and not overshadowed by cancer.  It was so good.

It came at a time when I really needed it, and I'm thrilled to have been able to have it.  I know some days will be more tedious or stressful or totally unproductive and no one knows what kind of days may come.  But this one was the kind of day that gives me peace and I enjoyed it immensely.

All sorts of updates

Wilhelm Conrad Roentgen, who discovered X-Rays,
won the first Nobel prize in physics, and started the
chain of events that made my hip feel much, much better.

Yesterday I found out the clinical trial I was expecting to be in isn't going to happen after all.  The sponsoring organization is having some delays in opening it up, so it won't be enrolling until, most likely, May.  I'm not willing to wait and my oncologist isn't recommending it.  So, yesterday we moved on.

I guess the clinical trial just wasn't meant to be. I keep telling myself that if it was the right thing for me, it's what would have happened.  Goodness knows there have been enough things I found discouraging in life that later turned out to be for the best, so I guess there's no reason why this couldn't be one of them.

So instead of a consenting to the clinical trial, I got my second dose of Xgeva (as scheduled) and my first dose of Faslodex (Fulvestrant).  I need to come back in 2 weeks for my second dose, but after that it's one dose every month at the same time as the Xgeva.

In effect, it's the same as being on one of the arms of the clinical trial, the one with the drug (which would have been Faslodex anyway) and the two placebos, except that it's all the "benefits" of the placebos without needing to take placebos.  

Put that way, it sounds almost awesome, doesn't it?

Hopefully the Faslodex without the other drugs will work well, and work well for a long, long time.  It is one standard treatment for this and it can work well, even where Tamoxifen was a dismal failure (and honestly, my quick trip to mets on tamoxifen really does have to be considered a dismal failure).  I'm hoping Faslodex works beautifully for me.

Unfortunately, the Faslodex is an "intramuscular" injection, given in two shots deep into 2 big muscles.  It hurt at the time and hurt most of the evening.  I'm still sore today, but if it does the trick I'd gladly put up with that and then some.  

Fortunately the Xgeva is "subcutanious" injection, so that one goes under the skin in my upper arm.  I won't lie, it does sting, but when it's over at least it's over.

Both the Xgeva and the Faslodex have similar side effects, mostly headaches, muscle aches, and some GI stuff, but so far for me it hasn't been that bad.

Fortunately, in contrast to the moderate unpleasantness of the Faslodex and Xgeva, my radiation therapy is darn near miraculous.  

Before I started the radiation my hip was already feeling a bit better than I had been at my worst.  I don't know if that was due to being very careful to avoid using the joint more than was necessary or something unexpected with the Xgeva, but I'm glad of it.

Still, I think the radiation was a good decision.  I just can't get over how much better my hip feels each day.  From what I hear from my Radiation Oncologist, Radiation Nurse, Radiation Therapists (yes, lots of radiation people on my team), how long it takes to feel better varies considerably from person to person.  After my tamoxifen failure at the same time as the failure on my previous clinical trial, the failure to get in to this next clinical trial, the unpleasantness of all the injections, and what was generally a hard day, I'm pretty glad to have something going pretty nicely right now!

Every single day I'm noticing something better after radiation than I had the day before, which is incredibly cool.  On day 2, I was able to bend my leg to put on socks in a way that had been excruciating the day before.  On day 3, I noticed I could get into the car without having to brace myself with the good leg and fall into the seat.  Day 4, I could get out of the car like a normal person without having to twist around and flip my right leg out first and I'm a lot less aware of where my bones are and if I'm putting pressure on them.  This morning, I woke up and noticed for the first time in a long time that my hip hadn't hurt every time I rolled over to the side that bent the joint.  

And the best part is, so far I haven't had any of the side effects I was told could happen, and none I wasn't told about either.  Just plain none!

Well done, Wilhelm Röntgen and company, well done.

Tamoxifen is no longer my new best friend, but I think radiation therapy will fill that vacant spot quite nicely.

Yesterday was a long and moderately depressing day, but today is better and that's really what the goal is here.  A few tough days (if necessary) in exchange for more days in general and, with any luck, a lovely long string better days to come.

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.

I am not a meme

Paul Klee - Dance, You Monster, to My Soft Song

 In news that will be no surprise to anyone, there are a ton of cancer related memes on the net.  Some are really touching, but some are a bit odd.  Some are supposed to raise awareness (that bra color one, the where you put your purse one), some are the online version of chain letters (those photo ones where you're supposed to "like/repost if you hate cancer, ignore if you don't care"--and no, I don't for a second think that's true of people who don't "like" or "repost" and I hate that people try to pressure other people into posting stuff by telling them some version of that.  But, hey, now you have real and true permission from an actual, real-life cancer patient to refuse to repost or like if you don't feel like it, so there is that), and some are good old fashioned guilt trips bundled together with messages of support (the "you only think you want something nice, but you'd be totally grateful for that life you're wasting if you were a poor, saint-like cancer patient").

For the record, I don't fault anyone who posts these things--some of my favorite people have--and I'm all for awareness and support, and I'm especially all for hating cancer, because (if you weren't already "aware") cancer is sort of bad.

Unfortunately, this is a topic I think about a lot, and have for a while, but now that I've "outed" myself with this blog, I'm a little reluctant to tackle it.  I don't want to hurt people's feelings, especially not people who are being supportive, so if you're someone who's feeling like I'm criticising your meme use, please remember that I'm not upset with anyone in particular or feeling bad about posting memes, and please don't be afraid to say something nice after reading this post because now you think it might upset me or something, that's not what I mean here so please get that out of your head. This is just something I find interesting and out of synch enough to want to comment on.  It's me, not you.  That's all.

So, here goes.

I'm a little put off by the notion that seems to roar through our culture, oftentimes while clinging to memes for dear life, that having cancer makes you different in a predictable and positive way.  Trust me, it doesn't.  Cancer makes me worry sometimes, it makes me sad, it makes me grateful, it makes my hip hurt, it makes me interested in news about treatments and new drugs.  But it does not make me different.  It just gives me different things to coordinate.

Cancer comes to all kinds of people in all kinds of situations in all kinds of variations with all kinds of degrees of seriousness and all kinds of recommended treatment.  But, unless it's a brain tumor, and even then only sometimes, cancer doesn't change the person you are.

Cancer may be an opportunity to show how you react, it may be an opening to readjust some priorities, or mull over different things (...ahem...), but I don't believe it really changes who someone is at the core.  And I definitely don't believe there's any sanctifying influence in becoming a cancer patient.

To try and illustrate what I'm talking about here: I read one blog by a breast cancer patient who freely posts her full name and personal information on her blog and from the very start shared that blog with friends, local newspapers, her hospital's website, etc.  On the other hand, she writes that she doesn't know or want to know what stage she was, much less her prognosis, and she needs Ativan to get an MRI and puts off scheduling a CT scan because she's afraid of what it might show.  None of this is inherently bad, that's not at all what I'm saying, but you'll notice it is very different from my own feelings and experiences.  My point is, we both have breast cancer, but it didn't make each of us over into some kind of rare and mythical breast cancer patient personality, it just made us ourselves with cancer.

And, without running down characteristics of every other cancer blogger and poster and person I know and how we think differently on a host of things, I hope you can still see the point I'm trying to get at.

I wonder, sometimes, if we (yes, "we," this includes me, too) like to think of some kind of magical sainting process coming with all kinds of hardship to try and insulate ourselves from some of the nastier parts of life.  We create these tropes to explain to ourselves that getting through junk isn't how we think it would be for us because there's this crazy gift of differentness that comes down and makes it bearable.  But I feel like that denies the love and support, hope, faith, and human perseverence that really helps all of us get through tough things.

Remember that meme that said something like "you may want a vacation but a cancer patient just wants to live"?  Untrue.  I want to live and have a vacation.  I'm human like that.  And so is every other cancer patient.  People don't just suddenly become immune to human wants and desires just because there's a bigger priority.  I'm sure most cancer patients would choose health over a vacation, a raise, or new shoes, but it's not like those are either/or options.  And it certainly isn't a choice between your vacation, raise, and new shoes and my health!  That's just not how it works (wish it did, though, because I would love to get rid of cancer as easily as you denying yourself those cute boots you've been eyeing.  But since it doesn't work that way, I hope you enjoy your new boots!).

People sometimes say things to cancer patients that begin with, "I could never...."  But, know what? You totally could if you had to.  Really.  If I can do it, if other patients with other cancers in other situations can do it, it can be done by anyone who's motivated to do it.  It's like anything else in life, you just do what needs to be done.  That's it.

Because I'm a geek, I'm going to close this one off with my favorite Tolkein quote:

“I wish it need not have happened in my time," said Frodo."So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

I think that pretty well sums it up.  All we can do is decide what we choose to do when bad things come.  We can't decide what comes, and neither it nor we have the power to change who we are when it comes, but we, as the people we are, can and do decide how to face it.  All of us, as the people we are.

This could be the making of me

William Blake - Ancient of Days

One of the things about cancer is that there really are no (or at least very few) absolutes in treatment.  They have things that "usually" work or "often" help, but there's no real guarantee that it will work for me.

This is one of the hardest things for me to deal with.  I don't like to take chances and I'm very, very fond of sure things.

People who work with cancer do, of course, absolutely know what works a lot of the time.  They know if something has been proven to work better than other things, plus they understand the reasons certain things should be effective (for instance, my cancer, both in the original tumor and now in the bone, has been tested and found to have estrogen receptors, so depriving it of estrogen is considered a good approach because it both fits the science and has worked in controlled trials for others with similar cancer characteristics).

But, with cancer (like, unfortunately, with so many things) there is still a chance it won't work. Kind of like how I had the "most likely to cure this" treatments last time and yet....

Basically, there are still a lot of unknowns.

In the next week, I'll have been off the tamoxifen (no longer my best friend) long enough to "officially" have it out of my system and be ready to start the next treatment plan (the Xgeva I started a few weeks ago is intended to help prevent further bone damage from the cancer, but it's not supposed to kill the beast).  The plan is to move on to a different kind of anti-hormonal drug (probably an estrogen downregulator, possibly with or instead an aromatase inhibitor, both of which are different than an estrogen blocker like tamoxifen was, for those keeping track or playing cancer treatment bingo).  If that works, then great!  And hopefully it will work and work for a long time.  But, if not, I will probably be on to chemo fairly soon (then, hopefully that will work and work for a long time).

But, of course, we won't know what will happen to the cancer until it actually happens.

For now, with this next treatment plan, the question is which particular estrogen treatment (there are seveal out there for post-menopausal/post-chemopausal women to choose from) and what else goes with it.  And, for now, the non-answer answer is, "it depends."

As I mentioned in an earlier post, my oncologist is recommending a clinical trial for me.  I'm hoping it pans out.  There are a lot of pieces that have to fall into place for it.  Things that do look likely to fall into place, but it's not a sure thing.

The trial is just opening up--in a way that feels very cool because if I was diagnosed even a month before I was, I would have already been on an aromatase inhibitor or estrogen downregulator and not eligible for the trial, so that feels like a good sign--but, because it's just opening up, my hospital's institutional review board still needs to approve it for their patients.  They were meeting at the end of last week, so hopefully that's done with, but if they were to put off making a decision, we wouldn't put off treatment (because cancer) so that would mean I'm out of the trial.

If it is now approved by the IRB, there are still some tests I need to "pass" to meet the requirements.  I should pass them, no problem, but there's a chance that I won't.  Wouldn't be the worst thing ever, of course, because I'd still go on one of the standard treatments, but it would be disappointing.

And if it's approved and I'm approved, there's still a chance the institution coordinating the trial will have delays in opening it on their end.  Which would also mean I'd be out of it.

But, even if all of that works like a clockwork (and I hope it does), there's still the fact that it's a double-blind clinical trial.  This particular one is, I believe (and my oncologist believes), a pretty good bet for someone like me who's not in dire straights and who's not already run through multiple treatments: it's testing 3 different currently on the market drugs to see if they work better together, so it's not testing a new product yet to be used in the larger world and, therefore, not testing things without long track records.  Also, it's a phase III trial, which means it's passed tests for dosing and safety already.  And, most importantly, no matter which "arm" of the trial I end up in (between drug plus 2 placebos, 2 drugs plus placebo, or 3 real drugs), I'll still be receiving the drug that is an accepted standard of care for someone in my situation in any of the 3 arms.  So that part, of course, is not at risk.

But it's kind of a gamble, even if I'm in the trial, as to which arm I'm in and which arm I should want be in.

I'm relying on faith (ok, faith combined with the knowledge that I'll still be getting good treatment no matter what else goes with it) that whatever I'm on will be "right".  I'm hoping for the best, and hoping it brings me to NED (no evidence of disease) and keeps me there for a very long time.

I try to remember that God has a plan for me even when I don't know what it is.  But, unfortunately, God doesn't promise eternal life on earth and doesn't promise there will be no trials in this life, either (trial/trial? I guess it works either way, right?), so there is that.

In the end, this trial could be one of many things that I'm not doing in life, it could be just another treatment that does or doesn't work for me against my cancer.  Or, you never know, it could just be the thing that saves me.

Here's hoping for that last one.  Whichever meaning of "trial" and "save" you want to apply to that, let's just put our hope in that one.

Owning it

John Everett Millais - The Woodsman's Daughter

I've been blogging here for 5 months now, which in and of itself is hard to believe.  I shared my writing with my husband the early on, and a few months later shared it with my daughter.  I've also shared it with other breast cancer patients, but it wasn't until last week that I (finally) shared it with family and friends.

I guess I was a little nervous.

I've written before about how when stage IV was finally official, it took me some time to feel up to sharing it with people.  That was part of it.

But also, what I write here is true to what's going on, but at times it's also deeply personal and not always that flattering.

Until I personally shared this blog with people who know me, I had the luxury of knowing that any criticism would stay with the blog and not spill out into the rest of my life.

I have no idea if everyone struggles so much with that or if it's just the combination of my particular nature and experience that made me skittish (ok, possibly combined with my striking inability to consistently remember that I've well and truly aged out of the K through 12 bracket and the powerlessness that that bracket entailed), but sharing the blog really didn't come easy.  I fully realize the fault is on me; I have a lot of good people in my life who really aren't the sort to tear me down, but putting what I think out there in black and white and then tying it back to myself was still a hard thing for me to do.

But a really funny thing happened when I did share my new diagnosis and the blog.

People were not only really warm and loving about the stage IV thing (which I sort of expected because I know awesome people) but also people actually wanted read the blog and said they liked it.

Crazy.

I thought it might be interesting to other people going through this in the same way I've found it helpful to read other people's experiences with cancer--sort of a shared "me too" combined with a dash of "how interesting, that's so different from how I feel"--but it never really occurred to me that people who don't have breast cancer would want to know what I was thinking about here in relation to cancer.

One of my brothers likened it to finding out there was a whole "cancer Kate" that no one knew about.  Not the same as not knowing I had cancer, of course, I'm not that secretive, but I guess I tend to take "Give to Caesar what belongs to Caesar" a bit too far sometimes.  I've been feeling like cancer thoughts need to stay in that cancer place and not spill out too far (at least not without an invitation) into the happy places that aren't cancer-related.

Turns out, some people wanted to be let in and some people were even interested but didn't want to pry.

It defiantly feels a bit weird being this open about everything and tying it back to my non-cancer life.  In the last week I've had a couple of conversations that had me thinking it felt so odd to have things brought up that I posted, like people were reading my mind (because, of course, in a pretty literal way, people were reading what was on my mind).  It's not a bad thing, just feels strange to me.

Now that I have shared the blog, I'm both relieved and glad.  And a little proud of myself for taking that risk.  I hope it doesn't become too much of whatever it is that will upset anyone, but I guess no one has to keep reading it who doesn't want to.

Thank you everyone who's read this blog, those who know me through this blog and those who knew me but maybe now know me a little more.  I'm grateful to have you here with me.

Why I Have Breast Cancer on My Femur

Thomas Cole - The Course of Empire: Destruction

Common thing to wonder: Why do you have breast cancer on your femur?

Philosophical answer:  Beats the heck out of me.  One day I work up and there it was.

Explanatory answer:  A lot of people are wondering why cancer on my bones isn't called bone cancer.

I know it sounds a little weird to say I have breast cancer on my bones, but there's actually a good reason for it.  It goes like this this: cancer isn't an invader, at least not in the classical sense.  Cancer isn't something I "caught" from the outside the way you would a virus or germ.  My cancer is all me.  All natural.  Completely homegrown.

Cancer is my own cells, in this case cells from the milk ducts my (former) breast that went a little crazy.  One or two of my own cells changed a bit and overcame the things that would normally keep them in line and kept them growing in nice, tidy, duct-like ways.  Insteasd, they got out of control and kept growing willy-nilly, dividing and redividing and forming a couple of masses made up of cloned copies of their mutated selves.

The masses got big and broke through the ducts where they started, spilling into to the surrounding tissue.  They continued growing and even added access to my blood supply to continue feed the bulk of them as the mass grew larger and larger. At some point, some cells broke off and left the area in search of new places to colonize.  Some traveled through the lymphatic system, which is why I had cancer in and around the lymph nodes under my arm.  Some may have gone through the blood system, too, but there's no way to know for sure about that.

What we can tell is that in their quest for world domination, when these cells left the breast they formed new lesions on my bones, making a new home on particularly bones that have a rich blood supply and can feed them in a manner consistent with their needs.

Without intervention, they just keep growing and trying to spread out without realizing that in doing so they're jeopardising the very thing they need to survive.

Brief semi-religious deviation: I think of these cancerous cells like Adam and Eve in the garden.  They want to be like God but they only know the parts of God they themselves experience and have no idea of all the things outside of themselves that being God involves (of course, clearly, neither do I).  These cancerous cells seem hell bent on taking over, spreading out and pushing their way into the places of me that will best support their continued growth and quest for domination.  But  what they don't understand is, if they win, they really lose.  They can't be the God of me because taking over everything would kill me and without me there is no them.  Their view is limited to the inside of my body and they act like they think my body is all there is and could support them forever no matter what they do.

Stupid cancer.

Continued somewhat anthropomorphic but otherwise factual explanation: So now they've set up shop on a few of my bones.  But they aren't bone cells gone rogue (which would make them real bone cancer), they're still breast cells. Breast cells with mutations that have colonized on my bones, but breast cells nonetheless.

And the important thing is, they still act like mutated breast cells.  They have some characteristics that come from those ductal cell origins that, hopefully, can be be used against them to stop them or at least seriously slow them down.

But if we were to treat them like bone cells gone all crazy on me, that wouldn't work so well because bone cells don't act the same way as breast cells (which, actually, probably goes without saying) and bone cancer doesn't necessarily react to treatments the same way breast cancer does.  Even when the breast cancer is currently thriving in my bones.

And that's how I came to have breast cancer on my femur.

Pictures of Me

Image from Hewlett-Packard "Pictures of You" video ad

A few years back, Hewlett-Packard put out what, to me at least, was a very powerful series of commercials under the "HP + You" ad campaign.

They featured popular picture-related songs and video of people using HP products to capture pieces of everyday life and save them in a meaningful way.

One of the ads in the series used the song, "Pictures of You" by the Cure, circa 1989.  That one is my favorite because it not only uses compelling images and copy, but also because it brings me back to a different point in my life when I was a teenager and a huge Cure fan (with posters, and concert t-shirts to prove it, and yes, I'm still a Cure fan because cancer jokes are the best, but that's not the point here).  It was a very different time in my life (obviously) and one when I felt both a well developed sense of teenage nihilism and, at the same time, hopeful expectation for all the possibilities in life that might be just around the corner.

I know those two ideas, nihilism and hopeful expectation, don't really belong together, but I don't think that's an uncommon combination, especially for young people the age I was at that time.

If you were to talk with me then about my bleaker thoughts, you'd get an accurate picture of who I was, but not the full story.  If you were to talk with me about my crazy-optimistic thoughts, you'd also get an accurate picture, but again not the full story.

I think of this blog in the same way.  It's a series of snapshots that together tell part of my story as it relates to cancer.  But, while each post, each bit and piece, is true to what I'm feeling at the time, each may or may not tie too closely to the whole of my experience or the whole of my life. Or at least the part of my life that has to do with cancer as it relates to me.

To give a small example of what's not in the snapshots, I try not to tell others' stories too much, except as they relate to mine, because I don't feel that's my place.  So when you read this blog, you may not truly see how wonderful and special the people in my life are.  They are wonderful and special, but it's just not what I feel comfortable elaborating on here.

But I do try to write about what's going on with me and what I'm feeling as it relates to my cancer, and that task I try to take on even when it isn't always that comfortable.  But even there, it's a series of snapshots from moments in time.

When I had my bone scan, there was a monitor to the side where I could (with maybe a little tilt of my head and neck once safely out of the scanner) see the individual dots collecting one at a time until, over time, they started to form an image in the shape of my bones.

I think (well, I hope anyway) that while each individual idea on this blog, and each individual post that contains a handful of them, represents thoughts from one point in time, as they add up they may tie together to, eventually, give a more rounded view of how things are.

When I posted after just finding out I was back to the cancer wars, you're seeing me at a somewhat addled and frightened place.  When you read posts from when I first started this blog, you're seeing some of the soapbox rants that had probably been kicking around in my head just a tiny bit too long before they made it out.  Both of those are true and part of me, but hopefully have to do with their time and circumstances more than they do with my identity as a constantly freaked-out, course-mouthed ranter (not that I could rule it out, but I hope that's not the usual me).

Thinking about that song by the Cure, it's actually a fairly odd choice for a commercial.  It does, of course, contain the line "pictures of you," so it has that going for it, but that may be the only appropriate part.  The rest of the song is a thoroughly depressing elegy to a lost love who may have left or may have died, but either way it happened in the most heartbreaking of ways.  I still think it's a beautiful song, but at the same time I recognize that it's terribly, elegantly, heartbreakingly sad in the way that post-punk 80's Goth bands did so well.

I hope my posts on this blog don't paint a picture too much like that.  In my own mind, I see myself as optimistic and hopeful (in the way of actual hope, not the manufactured cancer-fundraiser-machine fueled hope).  But I also know that part of keeping that side of me strong is taking the time to also put the rougher parts down in writing here.

I enjoy revisiting songs from that earlier part of my life, even the wistful and depressing ones.  They remind me of the full picture of the person I was at that time, that young woman fueled by worldliness and naïveté, disillusionment and hopefulness, all more or less in equal measure with a large helping of  "What's the worst that could happen? Might as well give it a go!" thrown in to give it some spark. I like the person I was then--I actually like her much more now than I ever did at the time--and I admire her determination.

But, I'm not always sure how many parts of the young person I was then remain with me now. I know I'm more comfortable in my life now, more even keeled and more confident (I know, I know, if this is called more confident...please just stick with me here).  But I also hope some of the finest parts of her still remain.

And I hope when I, and anyone who reads this blog, look back on this part of my life in blog form, we can both take the good parts and the bad parts and work them together into a greater whole with, if I'm lucky, a few identifiable finer parts that through it all may still remain.

Radiant (everything you ever wanted to know about me and radiation oncology)

Garth Williams - from Charlotte's Web
(one of Charlotte's words for Wilber is "Radiant")

The other day I went in to see my radiation oncologist.

For those of you not in cancer world, the oncologist breakdown is like this: solid tumor cancer treatment teams can involve both a medical oncologist and a radiation oncologist.  The medical oncologist is the one who takes care of the drug treatments and manages that care and all the follow-ups when care is done. The radiation oncologist plans and follows radiation therapy treatments.  But, not every cancer patient would benefit from radiation therapy, just like not every cancer patient needs chemo.

When I say "my oncologist" I'm generally talking about my medical oncologist, but, as I mentioned, I have a radiation oncologist, too.

My radiation oncologist is just the nicest woman. She's from Russia and starts conversations with phrases like, "well, my dear..." And, she clearly cares deeply about her patients.  If you've ever heard the phrase "salt of the earth," this is who that phrase was meant for.

And, she's not the only one in that office who's lovely.  The women at the front desk act like they've known you forever--and are happy about it.  My radiology oncologist's oncology nurse, who worked with me during my last radiation treatments to help keep tabs on my situation and give me solutions for my side effects (in 2012, mainly a nice red sunburn like skin reaction, which is common, but not, fortunately, the open wounds which sometimes follow), stopped by while I was waiting to go in this time to chat and see how I was doing.

And the radiation therapists (the professionals who run the machines to administer the radiation according to the radiation oncologist's treatment plan) treat me like a person (which, as you know, I am), with caring and respect and never any indication that I might really be just one more task on a long day's list of tasks (which, let's face it, I probably also am).

So, anyhow, the place is full of really nice people who seem to actually work in medicine because they want to help patients.  And a couple of days ago, all these really nice people agreed to shoot me full of radiation from multiple angles 5 days a week for 4 weeks.  And I agreed to let them.

Back in 2012, because I wasn't stage IV back then, the chemotherapy was intended to hunt down and kill any cancer that might have spread through my body and the radiation was in the areas where the known cancer had been (right upper chest and axial lymph nodes) to kill any cells that might have escaped the surgery and chemo.  The hope was that between them, the chemo and radiation therapy would cure me of cancer.

It was a good effort.

At this point, though, the horse is clearly out of the barn, so to speak, and the cancer has moved on to several unconnected spots on my bones, so radiation is no longer with "curative intent."  If they tried, they could probably get all the bone lesions they know about, but the assumption is that since my cancer has already shown that it's out of the breast and onto the bones, there are probably more cells lurking about that are too small to see but that would still grow into a problem (no worries, though, because medical oncology still has a plan to slow them down).  

But, even without radiation for a cure, they still do give radiation therapy to stage IV patients if the tumor is causing pain or other unpleasant symptoms and it's in a place that can safely be radiated. In those cases, they'll take care of it.

I have lesions on my pelvis, femur, rib, and a bone in my neck, but it's really only the ones in the pelvis/femur that are causing me any pain.  Those were the ones that lead us to investigate the pain and led to this diagnosis (the rib and cervical spine ones showed up on the PET-CT, but they weren't what we were in there to look at at them at the time, in fact, I wasn't even aware of them until I talked to my medical oncologist after the biopsy).

At first, I thought I wouldn't try to get the painful mets radiated.  I was doing ok with regular doses of simultaneous Tylenol and Advil and the occasional stronger drug in the evening and at night, at least as long as I rested it as much as possible and avoided shoes with heels, avoided moving it too far in any direction, avoided coming down hard on that leg for any reason, and walked carefully so as to gently roll through the limited range of motion each time I took a step, and only walk or otherwise put pressure on that leg when I really needed to.

I swear, that actually seemed like a pretty reasonable solution at the time.

But now I've decided to go on and let them help.

The hope is that, eventually, the hormone blockers would do enough to the cancer to let the bone heal and that should make the pain stop.  But, radiation therapy would also relieve the pain, and in a whole lot less time.

So, suddenly, after dealing with this hip pain getting more and more painful since Autumn, after taking pain killers for weeks, after being careful to move carefully or not move at all, getting this taken care of as soon as possible seemed like it was actually a very good idea. And, being able to take an actual walk outside when the weather turns spring-like and beautiful seems like a wonderful goal.

Before they give you the radiation they plan it carefully.  By the time I got there for this most recent appointment, my radiation oncologist had already studied my PET-CT images and knew the goal.  So I lay on a specialized CT table, my legs held by a customized form to keep me in the same position each time, and they took some more images, gave me 3 little tattoos to serve as guide marks (fun to think of myself as all tatted up, but in reality they're just three tiny black dots that look like freckles and match the other 3 tiny black dots from my first course of radiation), and sent me on my way with a check-in badge and a schedule of appointments.

Now they get to do the hard stuff, which is figuring how to angle the beams so they converge on the lesions and don't cross each other too much in other places (places like those pesky internal organs I like to keep in my lower torso).  Do you remember in "Ghostbusters" where Harold Ramis tells Bill Murray, "Don't cross the streams," and when Bill Murray's character asks why, the answer is, "It would be bad"?  Well, crossing too many radiation beams is kind of like that.

So, in about a week, they'll have things all mapped out and ready to go. I'll show up, lay on a table for about 20 minutes, keep doing that each weekday for 4 weeks, and the people in the know will slowly but surely force these lesions to leave me the heck alone.

Sounds like a plan to me.




*If you want more info on radiation therapy, I highly recommend the video at the bottom of the page here.  And, actually, the rest of the site, too.

*If you happen to have read Anne Tyler's Beginner's Goodbye, you may remember Dorothy was referred to as an "Oncology Radiologist." From the description of her job in the book, it's pretty clear she was actually a radiation oncologist.  A radiologist reads imaging studies (X-rays, CT scans, MRIs) and, although I couldn't rule it out entirely, I'm pretty sure "Oncology Radiologist" isn't really a job, at least not in the US.

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.

Keep the home fires burning

"I'll Be Home for Christmas," is one of my favorite Christmas songs ever.  I have a tape (yes, a cassette tape) of Bing Crosby singing that song for the troops in 1943 and it's incredibly moving to hear it sung at a time of such loss and longing.  It's a beautiful song made more beautiful by the way it speaks to a particular time and place. 

I find the World War II years a very interesting era.  Brave men and women, a valiant cause, sacrifice for the greater good.  I know there were also dark parts of our involvement in that war (internment camps come to mind), but the cause itself, the brave march of average citizens come together to defeat Hitler and fascism and save a continent suffering in its grasp makes worthy tale along the lines of redemption stories, fairy tales, and every hero's journey ever told.

The first time I had cancer (how's that for an introductory clause?),  my daughter and I spent a lot of time watching movies.  I was recovering from surgery, then getting through chemo, so when my husband was at work (he took a lot of time off, but when I was ok to be home without his help) and my daughter was on summer vacation, she was free from homework and I was tired, so together we spent a lot of time exploring what Netflix had ready to entertain us.

We worked our way through a lot of Bollywood ("I Hate Luv Stories" was an early favorite) and then started in on World War II movies (including one with Tyrone Power, the "oh so handsome" actor my grandpa used to tease my grandma about).  We weren't so much watching soldier films, but more the "keep strong" inspirational ones that dealt with individuals and families left to hold down the fort, usually with brave self sacrifice, inspiring perseverance, and occasionally a little tragedy to bravely muddle through.

Lately I've been thinking a lot about all the war and battle language that get tied in with cancer.

It feels strange to think of myself as "warrior" partly because I'm not really the one coming up with the plans here.  Which, believe me, is a good thing. As a patient, I can and do give consent, of course, and I ask questions and don't hesitate to bring up for discussion things I'm curious or concerned about, but I think we can all agree that I'm better off talking to (and listening to) my oncologist than I am winging it on my own.  If she and I truly have equal knowledge, experience, and understanding when it comes to cancer, then I really need to find a new oncologist. Fast.

But I'm still thinking about it and trying to come up with something that comes closer to the experience, and to me, and in keeping with the war analogy, I think having cancer is really a lot more like being the ones left holding down the home front in times of war.

As I'm sure you already know, I don't actually have first hand experience with what it was really like to be home while a World War was going on.  Suffice to say, my image is probably a lot less about the real home front experience, and more about what movie makers and propaganda machines wanted to inspire with. But, since that's the sort of thing most of us alive today know about those years anyway, I guess that works out just as well in this instance.

The way I see it, with both, in a lot of ways you look around you and things are the same: same home, same routines, some or, if you're lucky, all of the same people you love; but it's not really the same at all.

You're aware that battles are raging somewhere, and you know the battles are probably of great strategic importance, but you don't know all about them and can't really see how they're going or which side is coming out ahead until later when you get some reports of the damage or lack thereof.

The usual routines are suddenly changed and you just have to deal with it, and you have no idea when or if things will ever return to the old "normal."  In wartime, maybe you have to go on without some people you count on, and make do with rationing and shortages, maybe hold down another job to make ends meet or fill in for a smaller workforce.  With cancer, or illness in general really, your routines and often your ability to do them are suddenly different, you're finding your way around a new reality, while simultaneously added appointments, treatments, and side effects take more time and attention.

You don't really see it much in the movies, but I wonder about how it was for people who lived through "The Great War" to see it all happening again just a single generation later.  The first one was supposed to be "The war to end all wars," but obviously it didn't really turn out that way.  I don't know that I need to elaborate too much on how that relates to what's going on with cancer like mine right now.

With war and, unfortunately, with cancer, too, you're hoping for the best and wishing for things to go well, but you also know that there's always a risk of that not happening.  And that risk is fundamentally out of your own hands and clearly not something you have that much control over.  You can do your part (buy War Bonds, donate tires, conserve gasoline; take your medications, have your treatments, and do all manner of good for you things) but your ability to have much impact on the outcomes is, in reality, severely limited.

But, in both cases, these battles and this war can be extremely important both now and in the future.  I'm sure war rations were irritating, but not as bad as an undefeated Hitler.  Obviously, defeating Hitler was actually much more urgent and important than pushing a single cancer into "No Evidence of Disease." No contest, really. But, since it isn't really an either/or situation, I'm just going to acknowledge that fact and let the statement stand.

In both cases, if you're lucky, there is so much support and caring, from family and friends and others going through this thing with you.  You may not share the same challenges, but it helps to know others are hoping and praying and pulling for you, are there to commiserate when things are hard and celebrate small and large victories.  I see that particular attitude as one of the greater things of that "Greatest Generation," the overall impression that everyone was in this together and everyone had a role to fulfill.  With cancer, it's probably fair to say there are more people who want to help then there are actual things to do to help, but the love, prayers, and support are both uplifting and humbling.  In a good way.

I know with this cancer there will be no single D-day, and unless science catches up in a surprising way, there aren't likely to be any "War Ends" announcements. I'm hoping for a long period of remission, but no one would say, "you're cured," at least not with what we know today, so there will be no personal versions of ticker-tape parades and dancing in the streets (Well, at least not for that reason. I'd still be ok with a ticker-tape parade and I'm pro-dancing-in-the-streets for small reasons as well as large).

But I guess at Christmas of 1943, no one who heard Bing's dulcet tones knew if they'd ever be home for Christmas again, either.  And still Bing sang and people listened and hoped and wished and prayed.  And life went on.  Just as it does today. 

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.

So about that second opinion...

As I mentioned previously, I did get a second opinion at Dana Farber Cancer Institute.

And, as many of you may have expected, it wasn't nearly as traumatic or gut wrenching as I was expecting from the big, huge, gigantic deal I was making it into beforehand.

Plus, I was really glad I did go, and it was very helpful on some different levels.

This post is especially for anyone who might be where I was a few weeks ago, all stressed out about getting a second opinion.  Because hindsight is 20/20 and I'd like to share my 20/20 with you.

1) Making the appointment and getting ready.

• As I mentioned in an earlier post, making the appointment was spectacularly easy.  I got the number from their website and called.  They put me through to a scheduler who works only with the breast cancer department and she asked me a ton of questions and emailed me a 1) an information form to fill out, 2) driving and parking directions, and 3) a list of what they would need from me and tips about getting all of the things they asked for.
•  I went to my regular hospital's site and printed out the records request form and the imaging study request form.  Filled them out and faxed them in.  
• For the pathology slides, as directed, I called my current hospital's pathology department to let them know Dana Farber would be requesting them.  I have no idea what the rules are for pathology and HIPAA but this one didn't need to be in writing, or at least not in my writing.
• For the images, I actually added a list of all the studies I've had and the modality and dates because I'm weird that way, but I suspect the start and end dates would have been enough.
• For the reports I specified everything from the date of my first screening mammogram (which made sense mostly because I was at an age at diagnosis to have only had one screening mammogram prior to that, if I had had more I guess I would have just asked for the most recent clean one prior to diagnosis, but I'm not sure about that one), but the woman in records who called me back told me they could screen it down by area, so on the phone I asked for only the reports relating to my cancer. (As usual, everyone at my current hospital is pleasant, and that even goes for the people in patient records who I think don't work with patients every day.  I don't know what they put in the water there, but some days I think I'd like to get some and pass it out liberally)
• The default for the medical records at my current hospital is printed on paper unless specified otherwise, so I asked for mine as PDFs on a CD.  As a cancer patient, I've been there more times than I can count and I didn't want to have to pick up a flipping book and get that to Dana Farber, so electronic seemed like the way to go.  Good thing, too, because what I got was over 300 pages on the PDF.
• I know I could have had them send them directly to Dana Farber, but I wanted to have a copy for myself, because I'm like that.  And, since they were electronic, it was easy enough to email them (password protected) to Dana Farber from here. (I also could have had my current hospital send them to me instead of picking them up, but it's not like I'm not going there enough anyway so I picked them up before an appointment.)
• The trend now is for places to give patients electronic access to their own records and I know my current hospital is working on that, but it's not up and running yet.  If you go somewhere that does, I imagine it would be even easier than all of this, so even better for you!
• I may have been able to just call oncology and ask them to put everything together for the second opinion, I'm not really sure about that.  But then again it was only 2 faxes, a phone call, and picking up some CDs and I was set.  Plus, I'm kind of a control freak and having something to coordinate helped me feel like I was at least doing something. 

2) What I actually learned at the second opinion appointment.

• Well, the short answer is "nothing" which, when you think about it, is kind of everything.
• The oncologist I saw at Dana Farber was great and easy to talk with.  She explained things clearly and nothing she told me was any different from what my regular oncologist had told me, which is good because if she had told me something completely different after all that care and treatment, that wouldn't have been very bad.
• She also told me that had I been at Dana Farber from the start they would have done exactly the same treatments as I had at my current hospital.  That particular statement was like gold to me, because, as much as my team seemed to be up on the latest and talking to me about recent studies and reports, as much as I've read NCCN guidelines, as much as I've compared my treatment to other women's with similar diagnoses, I still really needed to know that I hadn't doomed myself to this end by not making a different choice when this whole thing started.
• She gave me the report from Dana Farber's pathologists and explained it, and also said they agreed with my previous reports.  And, since there are just enough stories online about people who were told they had one thing until they got a second opinion and were told something else, usually with a side of, "that saved my live, thank God for [wherever the went for the second opinion]," that was also good to have confirmed.
• She also spoke highly of my plastic surgeon who had worked with her before going to my current hospital, and spoke highly of my radiation oncologist and told me if I was her patient she would still be happy to set up radiation treatments for me there to make it an easier drive, which I took as a vote of confidence.  So that was encouraging, especially given that my reconstruction is mostly done and I have all that radiation under my belt.  At this point it would not be encouraging to hear thinly veiled shock that I let those people treat me--unsolicited praise is much, much better.
• She looked at the clinical trials Dana Farber has open now and told me there wasn't anything she would recommend for me, but that the list changes regularly and also if a treatment failed, then there were trials I might be interested in.
• She said there was some question about whether an aromatase inhibitor (a different kind of endocrine therapy that could help starve my cancer from it's estrogen receptors) would work for me since the tamoxifen failed, something about the cancer possibly having estrogen receptors but not being much dependent on the estrogen, but she agreed that she would also recommend that as a first step.
• She reiterated that there were some good things about my cancer, in a stage IV kind of way, but that the quick recurrence was the not so good sign.
• Even though she didn't have anything completely different to tell me, it was helpful to hear her explain the same things from a different viewpoint.  Plus, I'm sure it also helped that I was a lot more settled mentally by the time the second opinion rolled around--for that reason alone it was helpful to get a refresher discussion on where I stand.

3) Managing the "Cheating Heart" thing

• Ok, that was actually much, much easier than I thought it would be.
• I mentioned it to my current oncologist during my appointment before the second opinion.  
• I put my current oncologist's contact information along with my primary on the Dana Farber "doctors to send information to" (or whatever the wording was) form so she could be in the loop with whatever Dana Farber did and thought.
• And, you know those stories of people who get second opinions and it's totally not a big deal and the two oncologists talk to each other and consult or otherwise share information like professional adults with the patient's good outcome as the goal?  Totally true.  I was expecting the Dana Farber doctor to send a written report or something, but (without me bringing it up), she told me she was going to call my current doctor and talk with her about it the next day.  When I spoke with my current doctor afterwards, my current doctor mentioned that she was playing phone tag with the Dana Farber doctor and talked with me about the appointment.
• So, yeah, not a big deal at all.

So, with all of that under my belt, I feel a lot better and I'm glad I did it.  I'm now tapped in to Dana Farber and can check in with them as needed and make appointments for peripheral services there if I feel the need.  If at some point I want to switch my care, I easily can, but for now, their affirmation of my treatment and my own comfort where I am is helpful.

And my advice to other cancer patients?  Getting a second opinion really isn't as hard as I thought it would be and, just like they say, it gave me a lot of peace of mind (after I got over the extreme stress leading up to it, of course!).  Do I wish I never had any reason to walk into Dana Farber? I know that goes without saying.  But since that doesn't seem to be the case, I'm glad I went ahead and did it.

Peeking out at the world

Andrew Wyeth - Christina's World

Well, I had my appointment for biopsy results  and discussing next steps (and I had my second opinion, too).  Even though the news was not unexpected, it kind of knocked the wind out of me.

I am now a stage IV cancer patient.

Sigh.

It's weird because I went into the appointment fully expecting this.  It's been a slow build up of clues from the pain, to the continuing and worsening pain, to the not ruling it out bone scan, to the highly suggestive of cancer PET-CT, to the fact that they wanted to biopsy, to the fact that no one called me quickly with a good report from that biopsy (usually bad news gets the quick calls, but in a case like this with an appointment upcoming, I would have expected a quick call for good news not bad).

I knew what my oncologist would say before my husband and I even entered the room and still it shook me.  Shook me hard.

I'm not an out of control kind of person, I cry at very sad or very happy stories, pictures, commercials, but I'm good in a crisis.  And I was my very in control self.

True to form, I listened to my oncologist, took notes, and asked questions.  I talked with the clinical trial coordinator about the exit kit for the clinical trial I was on but am no longer eligible to continue now that I have metastatic disease, and got some information about a new clinical trial just opening up.  I chatted about the weather and my not-so-easy veins with the technologist who drew my blood, and sat calmly going over a side effect list with the nurse who gave me my first dose of Xgeva (an injected medicine that makes it harder for the cancer to continue to eat away at my bones).

I think, outwardly, I really pulled it off.

But, the truth is, it's a damn good thing I took notes because I don't remember a whole lot about those conversations.  My oncologist called me yesterday to see if I had any questions about the new trial for stage IV patients that she thinks I would be a good fit for.  I had read the materials after the appointment and thought I had a handle on it (and was leaning against it), but on the call (a week after the appointment) she (very patiently) explained why all the things I had thought the study materials had said weren't actually what they had said.  She was kind enough to say several times that she could see how it was confusing, but the thing is I reread the materials last night and they were pretty darn clear (and sound like something I do want to be part of).  The problem wasn't them, it was me.  I swear I thought I was functioning mentally, but clearly there were some serious gaps.

My mind doesn't seem to want to deal with this at all, and I've become at once obsessed with reading all about this and at the same time pathologically afraid of dealing with it.

I've told people about the cancer only when I felt I really had to tell them or risk making things worse by my ongoing silence.  I've avoided Facebook, forums, and the telephone.  As you may have noticed, I've been keeping away from my blog.

I wonder if this part would have been easier if I had been more emotional from the start?  Maybe I would have gotten it all out and been ready much sooner to move on and adjust to my new identity as the new stage IV me?

The good news is I'm starting to feel more together.  Look, I'm even blogging!  I've been telling myself and the people who love me how many people with bone mets can go on like this for decades, but now I'm actually starting to hold that message in my own heart, as well.

I don't know what the future holds, but for the moment, I'm starting to be willing to just keep my head down and keep trying while I wait to see.  I believe just like this stage IV diagnosis was a slow build up of multiple results that more and more strongly suggested the outcome, that when my cancer evolves around first one treatment then another and another, there will be time to understand that fact before the full reality of what it means actually happens.

It may end up differently, but I just can't see a way to make life work and do the things I need and want to do if I'm constantly telling myself that the end is neigh.  Especially because there's a decent chance it won't be (see what I just did there?).

For now, I'm banking on having some years to go and hoping science will come up with new treatments faster than my particular cancer comes up with ways around them.  And beyond that, I realize that none of us ever get to live forever, but I'd really like to be here long enough to see a cure so I can damn well die later of something completely different.

So do not worry about tomorrow; for tomorrow will care for itself. 

Each day has enough trouble of its own.  Matthew 6:34