An Update and Baby Steps

Van Gogh - First Steps, after Millet

I had appointments with both my Radiation Oncologist and my Medical Oncologist last week and another round of injections (Faslodex, Xgeva, Lupron).  I don't enjoy the shots, of course, but somehow it feels more comfortable to have recently seen doctors.  I'm still waiting a few more weeks for my  CT and bone scans to see if this Faslodex is doing anything, but it's nice to have doctors check me over and decide there's nothing noticeably bad that they can see.

Of course, as I used to hear a lot when we were discussing different treatment options when I was stage III, I'm very healthy except for the cancer (yep, all except for that).  It was a good thing at the time because the comment was part of the decision making for whether there were additional worries about me going through the surgeries (there weren't and I did well) and being prescribed a nice aggressive chemo plan (it was a go and I made it through), but it always sounded funny to me.

But last week, my Radiation Oncologist told me I didn't need any follow up appointments since my Medical Oncologist is watching me closely and my radiated hip is doing nicely.  It does feel much better and the rectangles of skin that were in the radiation field have gone from dark-and-reddish to less-dark-and-brownish, so that's all good.

My Medical Oncologist was also pleased.  There was no blood work this time and I forgot to ask about my numbers from last time, but if there was something really worrisome she would normally have discussed it.  Nothing seems to be growing in the areas she felt and my lungs and heart are, apparently, sounding as they should.  So it was a nice easy visit--long may those last!

The one thing she did say was that I should try and get more exercise.  She suggested I use a pedometer and try to get in 10,000 steps a day.

Now, as I've mentioned before, I'm pretty much the most goody-two-shoes of all possible goody-two-shoes patients, so when I went home I diligently dug out the free pedometer I'd gotten at that cancer walk we did last October (the one with the weirdly self-conscious-making survivor sash that I guess I was lucky to be able to get while I still felt like a survivor without restriction...) and the count was on.

That first afternoon after the appointment was not to the 10,000 standard.  Part of that was doubtless because my sister-in-law met me at the medical center and we sat for an hour or so in Starbucks eating buttery pastries and drinking syrup laden coffee (well, syrup laden coffee for me anyway, she ordered something else but the pastries were a nice joint effort, and well worth that effort, too).  Not many steps involved at Starbucks, but at least if laughter really is the best medicine we were golden.

But, back to that pedometer (although obviously not as much fun as Starbucks), the next day I wore it to work and home and noticed that my usual day get me about 6500 steps.  I discovered that it turns out the 10,000 step thing is kind of a head fake--sound like something you can just work into your day but, for me at least, it actually requires a bit more strategy and some concerted effort.  I really need to actually take a walk if I'm to have any hope of hitting that.

So each day since then, I've done that.  Intentionally strapped on my running shoes (which I'd bought last fall when I started running again so I guess I can still call them that, even though running with mets in both hips would probably be a spectacularly bad idea) and gone for a walk.  Sometimes with my husband, sometimes with my daughter, and once, while at the beach celebrating my brother's birthday at another sister-in-law's family beach house, for a little while by myself with beautiful ocean views and marsh grasses taller than I am.

I've been surprised at how hard it's been.  I'm finding spending that time with loved ones or just running through thoughts by myself is a treat, but even walking fairly short distances leaves me winded and muscle sore.

To mix things up a bit, I've started logging into my Sparkpeople.com account again and using their chair cardio videos (I may graduate to their low-impact cardio at some point, but for now I think no impact is probably best).  And, yep, 11 minutes of cardio while sitting down also leaves me winded.

Nice.

I've been so careful not to stress the hip mets for so long that it's now difficult to wave my arms and legs around for a few minutes while sitting in a chair.

I guess my oncologist totally pegged it, I need to get more exercise.  I mean I really need to get more exercise.  And by "more", it looks like a starting point of some exercise would totally fit the bill.

So I've been doing it. I've been taking steps and logging my "progress". I know it's a good idea and I'm not in a position to ignore my oncologist's suggestions (I could ignore them, of course, anybody can. But I don't. Because cancer. And also because, come on, it's just walking for goodness sake).  So each day I've been doing that and with the added walks I've been hitting that 10,000 mark.

I spoke to another of my sisters-in-law yesterday (I have 6 of them, and all of them are the kind of people you're glad to be family with, so if it sounds like my world is chock full of sisters-in-law, that's because it is), who had gone from being a complete and total non-runner to training for (and completing) a half-marathon.  She's pretty inspirational and one of the things she told me was, basically, "Look at everything you've already gone through, you can do this, and it will get easier!"

It isn't very flattering to get winded taking a walk, but I'm glad I can (pre-radiation it hurt like heck) and I know my sister-in-law is right, with consistency, my system will adjust and it will get better. I'm proud of and impressed by the people I know who run, and I look back fondly on my own time as a cross-country runner (in college, a couple of decades ago), but for me, for now, I need to look at my walking, my seated cardio, and my growing string of 10,000 step days and also be proud.  Because you have to start somewhere, and it is a start.

Not a fortune teller

John Singer Sargent - El Jaleo

I have about a month until I get my first set of post-stage IV scans to see how things are going with my cancer and my treatments.  It will be the first real indication I have about how the Faslodex, with some assistance from the Lupron and Xgeva, is doing against my cancer.

In the meantime, of course, I'm continually focusing on every little thing to try and read it like tea leaves or the lines on my palm, looking for signs.  Wish I knew which one was the life line.

I do this even though I know looking for signs is completely useless.

My bones sometimes ache and my back or neck hurts.  It's a side effect of treatment, also not an uncommon thing for someone who's 44 not 24, but, at times I also worry that it's a sign that the cancer is spreading to more bones.  I try to remember which rib it was with mets.  I think about the neckbone that has cancer and wonder if it could be that.  Does Faslodex cause tumor flares before it gets to work?  What kind of timeframe would that be if it did?

I had a new cough about a week ago.  I sat there at work listening carefully and feeling better when I heard coworkers cough, too, because they aren't likely to have their nonexistent mets spread to their lungs, so maybe it's just a bug that's going through the office.  Or allergies.  Or part of the sore throat potential side-effect from one of my meds.  They say if it's cancer it will only get worse, not better.  It took a few days, but my cough is getting better.  Thank goodness.

The first two weeks after my first Xgeva shot I had vertigo most times when I shut my eyes.  Turns out it was a side effect of Xgeva that eventually went away.  But how cruel is that for a cancer medication to mimic a symptom of brain mets?

When I first was diagnosed with metastatic cancer, it was a strange relief not to have to wonder if every little thing was a sign that the cancer was back because, well, the cancer was back.

Turns out that relief was short lived. 

My mother sent me an article about a woman who is defying the odds and in her 3rd or 4th decade since being diagnosed with breast cancer mets.  I, unfortunately, recently read a different article written by the widower of a woman who lived only 8 months after her BC mets were discovered.  

I can't seem to help looking at these kinds of things trying very hard to see something in them that will tell me what my own future holds.  Some sort of similarity in the story I want to be, some kind of crucial difference in the story I wish I could forget about.  But you can't see what isn't there.  If the stories tell us anything, it's more about the crazy unpredictable nature of this disease.

And so, I try as best I can to remember that there will be plenty of time to worry about the bad stuff if bad stuff happens.  I tell myself that I'm getting the best medical care possible.  I remember that I'm doing all I can and I try very hard to let go and let God.

I wonder if it gets easier with time?  If my scans come back good, and the next set, and the set after that, will I start to be able to relax?  I have no idea, but I sincerely hope to be in a position to find out.

Like maybe in my 3rd or 4th decade from now, I'll update this post and let you know whether I'm still worrying.

In the meantime, I'll should probably try to stay away from runes and Magic 8 Balls. 

I wish I had breast cancer

The much discussed ad

Did any of you follow the controversy a few months ago about the pancreatic cancer charity ad which featured the image of a pancreatic cancer patient named Kerry and her quote, "I wish I had breast cancer"?

The reaction was, unsurprisingly, fairly negative and centered around the messed up idea of setting up a competition between cancers.  HuffPost's summary here does a good job of articulating the response.

And, in breast cancer circles, there was, understandably, a lot of dismay that this woman and this ad would treat our misfortune so lightly.

But , I have a confession to make.  In a lot of ways, I actually agree with her.

Pancreatic cancer has a poor survival rate and for a 24 year old kid to find herself in the position that Kerry in the ad finds herself in, that really, really stinks.

And the thing about breast cancer is that everyone knows about the breast cancer and its fundraising juggernaut, and if you happen to forget, each October brings another round of reminders.  It's also one of the most commonly diagnosed types of cancer in the US, so it touches a lot of lives and gives a lot of people a reason to know about it.  So, of course, with all that fundraising and interest has come probably way too much "awareness" but also research.  And the research has brought about some good advances in treatment.

Then there's also the fact that unlike a pancreas, breast cancer doesn't start in a place you need to keep.  A mastectomy is, technically, an amputation, but let's face it, losing those parts isn't incomparable with life.  It's emotional, it's surgery, it's not without risks, but you just don't need breasts the way you need a pancreas, or lungs, or a liver, or blood, or kidneys, or your brain.  So there's also that.

But the biggest thing about breast cancer is what many people think they know about it.  The fundraising goes hand in hand a veritable cottage industry of inspirational stories to the point where everyone "knows" you just have to get mammograms to find it early.  Everyone "knows" it can be taken care of as long as you get those mammograms.  Everyone "knows" there's a whole inspirational army of survivors who get together at Relay for Life and speak at dinners in October and share their brave stories about beating cancer.

When Kerry in the ad says she'd rather have breast cancer, I guess she's wishing for the "early detection saves lives" kind of breast cancer; the "tough situations don't last but tough people do" kind of breast cancer, the "I caught my cancer early and I'm a 10 year survivor (look at all my pretty pink stuff!)" kind of breast cancer.  And that's the part I understand.

Because, honestly, I'm with Kerry on this one.  As long as you  define breast cancer as the detectable, treatable, easily survivable, inspirational sisterhood kind of cancer that we all "know" about, and as long as you leave out the terminal metastatic breast cancer that often does get left out, then sure, I'd rather have that "breast cancer" then what I have, too.

Problem is, they aren't actually different diseases and you never know when the "harmless" kind is going to turn out to be not.

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

Eric Gill -  The Last Judgement

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

Morning Glories

One of the morning glory photos
my daughter took for me in 2012

Yesterday I started some morning glory seeds inside so they could get a jump on growing during this unseasonably cold spring we're having.  It's too damp and cold to plant them out and I don't want to wait too long or they won't bloom till September.

I've grown morning glories each summer for the last dozen years or so.  They were in pots on my balcony when we lived in an apartment and now grow on the rustic trellises my daughter and I MacGyvered out of sticks one year and leaned against the side of the shed.

Morning glories are easy to grow and I love the old fashioned beauty of them.  Plus, the worse you treat them they more they bloom, which is pretty nice for those of us who find ours our dedication to garden care sometimes waxing and waining as the summer progresses.

For 11 of the past 12 years, I grew my morning glories from seeds, usually saved from the year before and planted out when the weather was warm enough.  The only exception was 2012, the year I was first diagnosed with cancer.

That year, instead of growing them from seeds, I ended up buying a little flat of overgrown morning glories from a local garden center and stuck them into the ground between diagnosis and surgery.  As I recall, that year I had tried a few times to put some seeds in the ground between worry and uncertainty, but with so much rain and cool weather the seeds kept rotting in the dirt before they could take root.  With surgery looming and no morning glories in sight, I ran out of time and took what I could find so I could just have something--anything--that looked familiar growing outside my window that year.

I was so glad for that little flat of morning glories when I was recovering from surgery through June and July and dealing with chemo from July through October (well, no morning glories after the hard frosts in October, but you get the idea).  A lot of that time is a blur for me, but I remember distinctly asking my daughter to go out and take some pictures of the blooming flowers so I could look at them close up without having to go out there myself (I have to think that was after surgery because I was working part-time during chemo and, while not in fighting form, I should have been able to make it far enough to look without too much trouble.  But, as I said, details from that summer are a little hazy now).

Most years my flower garden is something I enjoy plotting out in the winter, starting from seed indoors in early spring, and planting out with care when May comes around.  I'm no expert by a long shot and things don't always work out, but I get a kick out of working on it and it makes my happy.  I even used to blog about my gardening trials and errors in those days before cancer (with actual readers, too--who knew other people would want to watch my seedlings grow?).  In 2012, by contrast, my flower garden consisted of the morning glories, some scattered marigold seeds, the 2 perennials I had planted in years past and the 3 random perennials that I grabbed from a plant sale right before surgery and shoved into the ground at the last minute so the dirt would have something in it besides weeds.

My mantra during 2012, with all the aggressive treatment aiming for a cure, was "next year."  Everything that was left undone, everything that was unpleasant, everything that made me sad, everything I wanted to do but wasn't up to doing that year was made a little better by remembering I could do it "next year."

Now it's two years later, and this year we're again dealing with a cool, damp spring.  I'm being good and babying my hip, but this year I'm not willing to wait until "next year," not if I can help it.

So now I have seedlings growing on my window sill, some purchased lobelia and dusty miller in the ground, and some bachelor button seeds scattered over soil in just the spot where I've planned them to be.  Those morning glory seeds are on my dining table, swelling up and getting ready to push up leaves and send down roots so they'll be ready to plant when the weather's right.  I'm not willing to put it off for "next year" when I have the chance to make it work now.

Pieces of my garden this year

I've become a bit obsessive about making this garden, this year, as lovely as I can.  I'm picturing a summer with days off spent sitting, reading, and drinking lemonade in the garden.  I want a place where I will spend some time smelling the evening fragrance of nicotiana and moonflower while dining with my loved ones on food from the grill and then toasting marshmallows while watching for fireflies and looking at the stars.

Goodness knows I'm no Martha Stewart, and I know full well there will be some (many) unexpected kinks preventing this from being a summer of utter and complete perfection.  I can live with that, but I just don't want it to be because I didn't try.  Not this year.

I  know not a single one of us really know what the future holds.  None of us know what the next year will bring, assuming we are even here when comes.  And I have to think sometimes that's a mercy.

But recent events, obviously, have helped give that abstract knowledge a hefty new reality.

So this year there will be morning glories.  There will be the deep purple nicotiana I love so much and the "broken plate" 4 o'clocks I've been meaning to grow.  There will be zinnias on the sunny side like my grandma used to love, but mine will be both solid and candy striped, because I think they look so pretty that way.  There will be the pot of pretty pink half-double petunia plants I started last month from the seeds I ordered last year but never bothered to plant.  In 2013 I thought it was no big deal, I'd plant those crazy petunias "next year."  Now it seems foolish to wait.

I know there may be dozens of "next years" given to me, and hopefully many "next years" where I feel great and put in every favorite flower I've ever had and some new favorites yet to be discovered.  But those years to come aren't certain.  What I do know is that this year is going to be beautiful because God has granted me enough health now to feel good enough to make it so, and I'm not willing to put it off to an uncertain future when I have the health to make it happen today.

Come what may

Eeyore doing what Eeyore does best, poor little guy.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Faslodex, you are very strange

Conceptual Faslodex in action, from AstraZeneca's video here

As I've mentioned before, one of the medicines I'm on to try and control the cancer is an injected drug called Faslodex.  It's given as 2 intramuscular injections every 2 weeks for the first 3 doses and monthly thereafter.

And it is a strange, strange drug.

For me, anyway, on the day of the injections the injection sites have this kind of cold burning pain.  About a day after that, the muscles it's injected into ache.  And after that, the bones in my hips ache.  Then the bones in my spine ache.  Then the muscles in my back ache.

And then, about a week later, after everything has settled down again and I'm feeling good, the muscles where it was injected ache, then the injection sites again have this kind of cold burning pain.  And then the bones in my hips ache. Then the bones in my spine ache.  After that, the muscles in my back start to ache.  And then....

It's certainly managable, not that terrible, and definately less painful than the pain I was having from the cancer itself before radiation zapped it away.

But it's really, really weird.

It happened with my first does and now with my second dose, too.  And last week along with the Faslodex, I also had the Lupron injected into the muscle and it brused a bit and was easily forgotten, so I'm pretty sure the issue isn't the injection and isn't the muscle, it seems to be the Faslodex itself.

From what I read online from others on the drug, not everyone has the same reactions, and for some people it's different each time.  I have another injection of it next week and after that I go a month between doses--I'm curious to see if continues and how it goes with a full month in between shots and whether it goes more smoothly with time.

Of course, in all honestly, even if it does stay exactly this way over and over for as long as I'm on it, I'm ok with it.  As long as it does what it's hoped to do in terms of slowing the cancer, Faslodex and I will be getting along just fine.

But is it very, very strange.