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.