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

My Cheating Heart

Paul Klee, The Sick Heart

The other day I made an appointment for a second opinion with Dana Farber for when my biopsy results are in.  I know getting a second opinion is a common and accepted practice that is expected for serious diagnoses like stage IV cancer. But still, I can't stop feeling like I'm cheating on my oncologist.

I know in my heart (my cheating heart) that this is a smart move. The right move. It's what cancer patients are supposed to do. And I'm certainly not sneaking around about it.  But it still feels stressful.

Part of the stress is just plain logistics. Now that I have the appointment, I need to get reports sent, slides sent, images from the tons and tons of scans I've had burned to CD and picked up to bring with me. There are forms to fill out, insurance to see about, and a drive into the city with traffic and parking hassles.

Part of the stress is the unknown.  I'm comfortable where I get my care and I know how to do it.  I know where to go, what to expect, who to go to when I have a question or concern, and how to go to them.  This new place?  All new. And that makes me feel like a 6 year old dropped off in a room full of strangers (ok, this happened to me a lot growing up, and I was never good at it, so this may just be my issue here, but there you have it).

Now, to be fair, Dana Farber is good at managing the logistics and unknown. I spoke for 45 minutes with a scheduler in the Breast Cancer department. She talked me through everything and immediately emailed me a set of documents with parking and directions, a list of what to get with tips on how to get them, and told me she was here to help and to never hesitate to reach out to her if I had questions. But still.

(Although actually, the really nice woman I spoke to about the appointment, also sort of irked me a bit--she kept telling me things like "Ok, first I want you to breathe--we have great doctors who help people with bone mets live for decades.  You're going to be fine." And I was thinking: I-already-am-breathing-and-my-own-oncologist-also-told-me-bone-mets-were-often-very-treatable-and-you-have-no-idea-if-I'm-going-to-be-fine-and-I-resent-being-treated-like-I-was-only-told-to-go-home-and-die-except-for-you-guys-because-I-wasn't-told-that-at-all-and-I'm-still-a-long-way-from-giving-up!  Yeah, I know she was actually being compassionate and comforting and my thinking was completely uncalled for.  I think cancer makes me a little high strung.)

And I'm sure part of the stress is just human nature and a natural sense of loyalty, even if it spreads beyond reasonable places for loyalty and into business transactions this way. It's maybe not appropriate here, but it's part of who I am and the kind of person I try to be in other settings.

But, unfortunately, I think my really big stress with getting a second opinion right now is once I get my second opinion, do I stay where I am or should I transfer my care? 

Now, before you even say it, I know I'm getting ahead of myself here. First I need to get the stuff and go to the appointment, then I need to think about the information, see how I feel, talk with my husband, do a gut check, etc., etc., then I can make a decision based on actual facts.

But there's just so much unknown! The future is yet to come and I don't have a crystal ball anywhere. I don't know if the care would be better one place or another--not just the treatment, but the care that goes with it. If I stay or go, would I regret it? What if one oncologist ended up doing something that worked better than what the other would do? What if a clinical trial at one place would end up working better for me than one at the other? Goodness knows, I can always find something to worry about no matter what I do.

One factor involved in this is, I like my oncologist and her nurse practitioner.  I am very happy with the care I've received, they are both smart and compassionate, and very on top of things.  My oncologist is up to date with research and studies and has good ideas and good solutions for the things that have come up so far. And she and her nurse practitioner are comfortable to talk with. I don't know what to expect at Dana Farber and, even after I have my appointment, if they are lovely and compassionate, I will still wonder if there may be a difference between attentiveness as a new second opinion and attentiveness as an established patient. Because even when I know things, there's still so much left over not to know. And you probably see what I mean about being good at finding things to worry about!

Another factor is, the place I've gotten my care so far isn't a dud hospital by any means. It's regionally well regarded in cancer care and nationally ranked in other specialties, including one I use. And, the place I go to did multispecialty consultive care before it was cool--it's really nice to have all my doctors on the same page without having to do the work myself. But, on the other hand, Dana Farber is a national leader. They do a ton of research, and are staffed by national experts who deal only with breast cancer. And they have a ton of programs and peripheral things to help the "whole person" dealing with cancer. They even have a conference call metastatic cancer support group--how perfect would that be?

If I'm being honest with myself (and I'm trying to be), there's another shallowish thing about Dana Farber that is really tempting me: Dana Farber doesn't have to explain itself.  Well, I mean of course they do, every place does, but what I mean is, lots of people who care about me seem to feel responsible for making sure I'm making good decisions. They want to make sure I'm getting good care, which is nice. Now, the people who have actually gone to appointments and know people who have gotten care where I do don't question me, and the questions are pretty much what you would ask about any cancer care.  But I feel like, people would be less likely to ask the questions about Dana Farber's recommendations for me. Because, come on, it's freaking Dana Farber! So that would be convenient.

And, of course, besides the "end of discussion" possibilities behind the "it's freaking Dana Farber!" thing, there's a part of me that understands that the fact that I can even write, "It's freaking Dana Farber" and have it mean something says a lot about the place itself and its reputation.  Which is something I need to think about. Not that I would necessarily get different treatment at Dana Farber for my not-that-rare kind of cancer than I would at other well run cancer centers, but I would be foolish not to consider what that reputation is built on.

So now I wait.  I wait for my biopsy results and my appointment with my oncologist.  Wait for my other appointment with a Dana Farber oncologist. Wait to see how it all goes and wait for some kind of sign to tell me what to do.  Then (possibly) wait for treatment to begin and wait to see if it works.

But as I write this, I'm thinking of one other thing, the last thing, which is that choosing between one local location or another for excellent care with a reasonable chance of decent outcomes, covered by my insurance, accessed with my working car on safe and well maintained highways, gone through with the support of supportive family and friends, and begun after a wait for results and appointments were I still feel petty good and am able to walk around while I wait (with a little help from Tylenol which we are able to afford), has got to be a pretty good problem to have. Yeah, I would give it all up for no cancer, but on the other hand, being a little grateful for having such choices probably wouldn't hurt me a bit.  

Biopsy into the "done" pile

Leonardo Da Vinci

Bone biopsy can now be checked off the "to do" list.

It was neither as bad as I feared nor as easy as I wished, but it's over with now and I'm on to keeping random unknown pathologists and lab technologists in my prayers (If you're a pathologist or lab technologist and feel kind of weird and blessed at the same time, well, there you go.  Now stop reading blogs and go do a great job testing that little bit of bone I just gave up for you.).

When the interventional radiologist came by before the procedure to give me my informed consent chat, he mentioned (in answer to my question about where exactly they were going in) that there were actually 2 lesions on my pelvis, although he was only going to biopsy one of them.

I hadn't known there were 2.  I guess it doesn't really matter but somehow it felt like a bit of a blow.

On the other hand, thinking on it now, it makes a lot of sense given the different times I'm feeling pain and where I'm feeling it.  It's probably a better thing that it be 2 different spots than one lesion big enough to cover both areas.  Plus, it's still apparently confined to the left pelvic bone, so that's also good (it always seems kind of odd what counts as good news when you're talking about cancer, the bar just seems to be a little low here).

He also mentioned that they would give me something so I wouldn't feel pain, but the feeling of pressure couldn't be drugged away.  I'm glad he mentioned that, because it certainly was true and it wasn't pleasant.  Quickly over with, but unpleasant in the way of things that just feel so completely wrong that you can't help but wince and want it over with immediately do.

They also gave me something in the IV that was supposed to make me feel "relaxed."  Don't know that I felt all that relaxed, but certainly tired and pretty loopy for a little bit there. And really, unless the loopy IV drug made time seem faster than it really was, the whole thing (in the procedure room, anyway) was pretty quick.  A bit of CT scan, a bit of measuring and marking, a needle or so of lidocaine, more CT scan, the whole puncture and press into my bone thing, and the next thing you know I'm done and on to recovery.

Something about it all made me pretty nauseous when it was over.  My money's on the "relaxing" drug, but I could also have just been the whole "needle through my flesh and into my bone" experience.  But, like lots of things, with a little bit of time and some kindness (my husband and some awesome nurses) the nausea eventually passed.  And once I was feeling a bit better, they let me order supper, which also helped, so maybe my money should have been on not being able to eat past early a.m. causing hunger nausea, but either way it's done now.

I know, especially with this new worrisome situation, I should probably be eating nothing but free range eggs, mushrooms, and acai berries, but you know what? I just didn't feel like it. The nurse gave me a menu--I don't know if most hospitals are like this and give you menus to order whatever you want any time all day and night and my mother just uses the one dud hospital that brings whatever the decide during the scheduled hour and you better like it 'cause that's all you'll get, or the other way around, but clearly this is the better way!--and I ordered good old fashioned spoonable porridge, comfort food in a bowl.  With brown sugar and not a single vegetable.  I usually eat pretty well, but enough is enough.  It was a long day and I had had it.

Now on to waiting about a week to find out how my bone looks and what we do about it.  And on to waiting for that "bone deep" puncture wound to heal.  And on to continuing to manage the original hip pain until we have the answers we need to do something more useful about it.

But at least I'm no longer "on to a bone biopsy." It really wasn't that terrible, but still, I'm glad it's done with and hoping not to have to repeat the experience any time soon.

Things I keep getting asked

Turns out a lot of people don't really know anything about metastatic breast cancer.  Not even a little surprising, because really, why would you?  But relatives have been calling to let me know they're praying and sending good wishes (which is really nice).  But tied in with that are a lot of questions that are starting to wear on my already kind of occupied mind these days.

Curious what people ask, directly or kind of veiled?  Well, I have you covered because here's the list of what I keep correcting, don't want to talk about, and/or would like to say but probably won't. 

• No, they aren't sure it's cancer until the biopsy, but there are just not that many things that look like cancer on a PET scan, and I have this kind of bad cancer that can spread, so it's looking that way, but we'll see.
• No, it isn't bone cancer.  No, really, what they're talking about is in the bone but it's not bone cancer.  It's breast cancer cells that have broken off from my original tumors and colonized on a bone.  But that still doesn't make it bone cancer.
• I don't need a bone marrow transplant.  If you offered to be tested, let me tell you I love you and I appreciate that you want to help, but, unfortunately, that's not going to cure me (Also, I don't think a bone marrow transplant would cure bone cancer, either, but I don't know that much about it).
•  No, it doesn't mean I got poor quality medical care with my first treatments and really should have gone somewhere else. I really did receive the nationally recommended care and treatment for what I had.  From smart people.  I always knew it had a 1 in 3 chance of coming back, even with the high quality care I received from well trained medical professionals. Also, I resent that question.  A lot.
• I'm not going to "get through this."  I totally appreciate the kind words, but if this turns out to be what they think it is, it isn't going to be like last time.  There isn't a defined set of treatments after which it's over when you're dealing with metastatic cancer.  This time it turns into ongoing efforts to keep it from spreading while at the same time the cancer keeps developing ways to get past the ongoing efforts to keep it from spreading.  I will live with it, hopefully for a very long time, but there is no "after" when you're talking stage IV. 
• I totally don't know what to say.  I know cancer patients are supposed to be super wise and philosophical, but I seem to have missed cancer-patient class the day they told us how to do that.  I'm wavering between denial, fear, depression, normalcy, and being completely overwhelmed, and at the same time feeling like I should make everyone who's concerned about me feel better.  But, honestly?  I have no idea how to get through this or what to tell people or how to react when people talk to me about how I'm doing or how I'm feeling or anything else related to this.  I wish I did, but I don't.  Also, you must have noticed I'm actually really awkward even on a good day, so I don't think awkwardness now can be that much of a surprise.

I am doing ok trying to figure things out a bit.  I vividly remember feeling the same sort of waves of on and off feelings and emotions and "how am I ever going to feel normal again" thoughts after the original diagnosis, but somehow I did "get through it" (see what I did there?).  Not sure how I'll ever get my head around this, but for now I'm doing ok.

Also, really, I promise you, it it's almost certainly breast cancer spread to my bones, not bone cancer.  Yes, breast cancer to the bones does happen, it's kind of what breast cancer does. 

Damn. Just damn.

Chagall - Bridges Over the River Siene

I'm not sure I can put down very well what I'm feeling right now.  I've gotten some really bad news.

Because I don't really feel up to that much, I'm going to start by just putting in some of what I posted on my favorite bc forum the other day:

Turns out my bone scan lit up and (after a snowstorm reschedule) I had a PET-CT and my onc tells me it looks like I have mets in my pelvis.  They're scheduling a bone biopsy, so I guess it's not a sure thing until then, but my onc seemed to feel it was very unlikely to be anything but mets, given the PET results and the history.

She tells me the good news is that my organs look clear, so that's the best sort of mets to have, but clearly mets are still not the best news to get.  

It's so strange, on the one hand I've been worrying about this for so long, especially since I started developing pain in my hip, that it almost feels good not to worry about it, if that makes any sense at all.  And on the other hand, it kind of ticks me off--I got mammograms, I keep healthy habits, eat berries and cruciferous veggies, take my tamoxifen like a champ--so this complete failure of cause and effect working the way I want it to makes me angry.  Useless to be angry, I know, but sometimes it feels good anyway.

I would appreciate any prayers and good healing thoughts anyone wants to send my way.  And I'm absolutely wishing you all continued good health and no more cancer ever!

So yeah.  I'm sort of in limbo, but it seems like the outer circles of the inferno are well within shouting distance (stupid Dante reference, wouldn't my AP English teacher be proud?).  There's a part of me that's holding out hope for some miraculous miracle of benign biopsy, but most of me feels like that's pretty stupid.

I was doing ok with things this morning, but I'm back to feeling really sad and gloomy this evening.  My emotions seem to come and go really quickly right now.  Also, weirdly enough, I'm finding that even when I don't feel like I'm feeling anything, physically I find myself feeling shivery or stomach achy or all sorts of tense.  I guess it's going to be a wild ride getting a handle on this one.

I keep telling everyone who I share this with (not many people, I'm so not ready to be not only "cancer girl" but "'terminal' cancer girl."  damn it.) that people can and do live decades with bone mets.  I know it's true, and sometimes I really do feel like that will be me, too, but there's still another part of me that's sitting in the corner, rolling her eyes, and saying, "yeah.  right.  got a bridge in brooklyn to sell ya, too." (turns out my grumpy subconscious doesn't like capitalization.  who knew?).

Thing is, I know that could be me, I could go with no evidence of disease for decades and decades and then sometime between now and 2025 they could come up with an actual cure and I could live to be the grumpy old lady shaking my fist at you, willfully neglecting to use capital letters, and muttering swear words under my breath.  It could happen.

But I feel like I've lost a little innocence.  I mean, I didn't argue, I didn't slack, I showed up on time for all my appointments, sat patiently through all that chemo, lay there bare chested and beamed with radiation day after day after damn stupid day.  I ate healthy food, exercised until I was told to try resting my stupid hip, and took that tamoxifen every.  single. day.  Because I wanted to be here for my family and was willing to do whatever it took.  I know it was still the best thing to do because it gave me the best chance possible, but having tried and (probably) failed, I know whatever else they try could also fail.  Because, ask me how I know.

(But the first person who want to take my story as proof that conventional treatments don't work had better take off running, because I don't have time for that crap and I'm not interested in your stupid theories.  I usually feel really uncomfortable being blunt like that and usually avoid it, but today I don't care.)

I'm sure at some point, I'll get my act together, stop acting more emo than the emo kids, and charge forward for all I'm worth.  And I'll probably read this later and wonder what the heck I was thinking.  And also I'll become obsessive about proper capitalization.  But that point isn't now.

So right now, I'm beginning this adventure by obsessively trying to mentally get out of being on this adventure.  And writing to try and obsessively find a little place of peace.

The Lord gives strength to his people;

    the Lord blesses his people with peace. 

Psalm 29:11

Don't notice me

I tend to be kind of an introvert, so maybe it's not surprising, but the weird thing about being diagnosed with cancer was the hard to navigate line between wanting to be taken care of and wanting everything to be completely normal.

I read several bloggers who let their bald heads proudly proclaim that cancer wasn't keeping them down.  I can appreciate that, but I reject the converse idea that wearing my awesomely realistic wig and not talking about cancer made me it's victim.  

I believe every woman who goes through this needs to do what she needs to do and for me, not being "that cancer girl" when I didn't need to be was something I needed.

In a lot of ways I was very lucky.  My insurance covered the wig (my state mandates that, I feel like maybe that isn't true nationally, but I'm not 100% sure) and I found the most comforting and talented wig seller (Mary Aframe at The Women's Image Center--if you're anywhere near central Massachusetts, I highly recommend giving her a call!) who helped me select a style and color that were just perfect.  Feeling comfortable about looking "normal" was important to me.

I told my coworkers I was having surgery (hell, I was out 7 weeks) but I only told my boss it was cancer until after the nodes were discovered to be positive and chemo was required.  I know this may seem odd, I understand that, but I just wanted as much of my normal life to be normal as possible.

I did tell my church family, and their prayers and meals were something I clung to.  My family and closer friends, of course, knew and especially my inlaws were incredibly helpful.  I definitely benefited from letting telling some people about it.

Maybe I'm just a wimp.  I never know how to respond to sympathy like that--do I put on a brave front?  Comment and say something that may end up being TMI?  Grin and bear it?  Because really, when I was dealing so much with cancer, the last thing I wanted to talk to people who weren't a) medical professionals or b) people who know and love me, was cancer.

I understand putting a living and surviving face on cancer may have been a great public service and an encouragement to others, but I just didn't feel like doing it.

Even a year later when I did a cancer walk with my husband and daughter, the big pink "survivor" sash felt odd and I didn't really know how to respond to the cheering "encouragers" along the course. It probably says plenty about my social anxiety and lack of reasonable interaction skills, but if I try to avoid uncomfortable situations on a good day, I guess I'm not too surprised about how I chose to deal when you throw cancer into then equation along with it!

If I had my wish, the cancer would have gone away--poof!  Wasn't possible (obviously!) so maybe having it gone away from large swaths off my life seemed like the next best thing.

It is weird, because now that I'm done with everything, I do sort of want a little credit.  I want people to understand what I went through and respect that.  But I only want it to be part off my identity to a certain point.

I don't say any of this to judge people who feel differently.  And I understand that people who act differently aren't judging me (or if they are, too bad, because I'm not getting it).  But I guess I feel the need to put my feelings out there and say, hey, there are all kinds of ways to deal with this and you can do what feels comfortable.  Goodness know there's enough discomfort going with it without pressuring yourself with more.  

A little bit of surgery

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

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

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

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

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

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

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

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

I attribute that to two things:

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

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

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

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

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

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