Post 103, in which I get a wire in my vein and an excellent surprise

Garth Williams from Little House in the Big Woods

Living with cancer means living with constant uncertainty.  For me that's one of the worst things to deal with.  You never know what's coming next and every single decision you make feels conditional.

Thursday I had my scans, a bone scan and a CT scan.  A good and a bad surprise there.  The good surprise was that my facility seems to have changed their oral contrast protocol, they've gone from nasty barium "smoothies" (2012 through 2015) to something else (iodine based, I think, early 2016) that tasted and felt better, to no oral contrast at all  (October 2016, February 2017) which is better still.  Twice in a row now it's been no oral contrast, so I think it must be a done deal.

I guess that's the joy of being a "frequent flyer."  Most people wouldn't know what they were missing, but with more CT scans than I can remember it's enough to know which flavors of barium smoothie to request (berry) and which to avoid at all costs (mochaccino), I know what I missed and I was thoroughly glad to miss it.

The bad surprise was apparently I don't actually have veins in my arm.  Ok, that's an exaggeration, I do have veins, but they're getting wise to the world of medical procedures and I guess they've decided it's time to fight back.  The first stick got in but hit some scar tissue or a valve and the IV had to be scrapped and the vein team was called in.  The vein team nurse tried again and the second vein collapsed so she decided to call in the top vein nurse.  The top vein team nurse tired a few different things and eventually called down a 3rd vein team nurse to put something called a midline catheter in a vein in my upper arm using ultrasound to guide it through.  More dramatic than I would have liked and kind of bad that it added an extra couple hours to the schedule, but, still, highly effective.

So I had my scans and went in the next day for my appointment with my oncologist.  I was honestly expecting, what with those rising tumor markers and having discussed potential next steps at last month's appointment and all, that she was going to tell me there was progression. Instead, I got an excellent surprise: turns out I'm stable and continuing on with Xeloda!

I asked about the tumor markers, but my oncologist told me that sometimes the same amount of cancer can evolve into one that just gives off more markers, so it could be that.  But also, she feels that it's not a good idea to switch treatments on tumor markers alone if I'm feeling good and the scans (and therefore the bones and liver) aren't getting worse.  You use up treatments that way for no good reason.  I like the way she thinks, it makes sense to me.

There had been some lessening in the cancerous lesions in the scans before this one, so I guess the news isn't quite not as great as it could be, but keeping the beast at bay another few months and not burning through another treatment is still, I think, always good news.

So now I'm in my kitchen, getting ready for the Superbowl.  Between typing I'm stopping to turn the bacon frying for potato skins.  Crockpot pulled pork is cooking away, a Turkish-Lebanese bread with feta and walnuts is rising on the counter and artichoke dip is mixed up and ready to heat. I'll be making cornepones to go with the pork closer to game time.  Our "baby" and I spent time yesterday trying on prom dress styles (with photos carefully emailed to her sister) and looking at fabric and patterns so I can begin sewing a dress once she decides on a style.  Nice to be here feeling well and feeling able to do these things I love, almost 3 years after my stage IV diagnosis, going on 5 years dealing with cancer.

It's good.  And I'm glad to be able to put off worrying about the next treatment, the next side effects, and how well the "next" will even work and if so for how long, at least for another few months.

I hope "our" Patriots win, but (and don't tell the rest of New England this), it's ok with me if they don't get this one.  I'm still going to consider this a winning kind of weekend.

Lighthouses, numbers, and upcoming scans

See all those inlets around Brunswick?
Wish I'd know what they meant to
the ocean *before* I got there!

It's been a while since I've posted anything.  Sorry for those who have been worrying.  Somehow as an adult, summer seems to have completely lost that "long days to do anything" quality it had when I was a kid.  It just seems like there's so much that needs doing in every direction!  Part of it's cancer (appointments every couple of weeks to check my blood counts as the regular protocol on Ibrance, or every single week to see if they're back up into "low but safer" range yet, walking every day) but a large part of it is just life with a job and a home and a family and a lot going on.  Just like everybody else!

It's not that I don't have time to post a quick update, of course, and I'm sorry I haven't.  Mentally, things feel very overwhelming these days.  Again, cancer and life.

I'm back on the Ibrance now, so that's good news.  Finally, on July 23rd my neutrophils went up to a whopping 1080.  You'll notice 1080 is higher than 1000 which meant I was cleared to start on the 75mg of Ibrance.

I went back to the hospital at the end of last week to see if my neutrophils were still ok after almost 2 weeks of the new, lower dose of Ibrance.  I honestly wasn't expecting good news because, come on, 80 points above the cut line isn't a lot of wiggle room!  But, much to my surprise, my neutrophils had actually gone up to a crazy 1400--still really low for normal people, but awesome in context! I guess there must be some lag time between cause and effect with the neutrophils, but I'm hoping it means we may have finally gotten to the sweet-spot between the two.

Actually, I really, really hope so because this current 75mg dose is the lowest one there is, so if I flunk out of this one, I'll have flunked out of the entire Ibrance regime.  I don't really want to burn through another one too fast!

Which, of course, brings up the only question that really matters here: it's all well and good that my neutrophils are doing better, but how's the cancer?

And for that, I have no idea.  My tumor markers were up a little bit in late July, but not as high as they were in June, so who knows if it's a trend or just normal variation?  I've been taking Ibrance since the end of April now, so almost 4 months, but I've successfully completed exactly one 28-day cycle, and I don't know what all that extra time off might mean. Luckily, I'm in the last week of pills for this current cycle, so that'll be two full cycles--go me!  I'd actually forgotten about the exhaustion and irritated throat/stomach/nose that come with many days in a row of this stuff, but after all the on and off with this drug, how can I complain?

At least this week I'll finally have some more answers--that CT scan we'd scheduled at my last appointment is finally coming right up, and that should tell us a lot more.

------

Almost a month ago already, my husband, daughter, and I took a nice weekend in Freeport, Maine.  I take a lot of my PTO for medical stuff, so a little Saturday-Sunday vacation away was just the ticket.

Maine was lovely, the weather was lovely, and strolling around Freeport made for a very relaxing time.

On Sunday morning, after we'd had Lobster Brunch (nice!) at the inn and checked out, we thought we'd go enjoy a little time on one of those beautiful beaches I thought Maine was known for.  Although many of my friends growing up went to Maine all the time and I'd heard about the beautiful beaches (Old Orchard! Oguncuit! Scarborough!), this Massachusetts girl has only been to Maine once, and that was for a wedding not swimming.  But I figured it's the same ocean we've been to here a 1000 times, what could go wrong?

Well, turns out, a lot could go wrong!  We went to a private campground/park nearby on the ocean, paid our per-person entrance fee, parked the car, grabbed our beach bag and walked to the water edge only to find our "beautiful Maine seacoast" was actually a mass of clay sludge and shallow, dirty water with sharp shells and seaweed everywhere.  We actually walked all the way around the point looking for the ocean we knew and loved (we are such rubes!).  We never found it.

I know, I know, should have done some research first!  I guess it never occurred to me that the Atlantic Ocean could be so different a few 100 miles up the coast. 

Part of life is knowing when to say when, and this one was an easy call.  We stopped just long enough to unsuccessfully try and wash off the sticky clay from our feet at the spigot before hopping back into the car and hightailing it back to the highway and heading home.

It was disappointment, for sure.

But a funny thing happened on the way to Massachusetts.  We'd been talking about how disappointing it was and my husband, who was driving, was secretly thinking about maybe trying one of the other beaches to maybe redeem the day a bit.  It might not be great, either, but it could hardly be worse.  As we were plugging down I-95 along with hundreds of other people at the end of a summer weekend, we came around a curve to a pile of breaklights just at the exit marked "York Beach".  Wait there with the rest of the traffic or take the exit?  That's an easy call!

So we went to York Beach and it was stunningly beautiful.  Miles and miles of clear sand and blue water rolling up wave after wave after wave.  There was even a lighthouse in the distance where the land and water met.  We had a wonderful time.

And a funny thing about that lighthouse, too.  I've had radiation therapy 2 courses now, both times in the same planning room and the same treatment room.  They have pretty pictures on the wall and over the ceiling light panel.  Gives the patient something to look at while you're lying there day after day.  I bet you can guess what those pictures were of, can't you?  Yeah, it was that lighthouse, the one that was sitting there waiting for us at York Beach.

I'd know it anywhere.

I took this pic because I was there!

I'd had 50+ different occasions to study that house, that light, the little fenced yard, the little red shed.  It felt comforting to see it again.

Is it just a coincidence that we accidentally discovered the same lighthouse that figured prominently in my cancer treatments? Maybe. You could certainly make that argument.  But I don't know, I like to think of it more like Noah's olive branch, like a little symbol of encouragement during a difficult time.

Maybe it is just one of those things that happens.  But to me, finding it there like that seems like a good sign.  Not sure what kinds of ups and downs are in store or what "good" ultimately means here, but cancer is a rollercoaster and Ibrance is, too, and I think I'll just take whatever good I can get my hands on--to me, this is just the one I needed, and right when I needed it, too.

7 months (or the natural history of breast cancer)

Cancer, chemo, and chocolate chip cookies

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

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

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

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

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

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

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

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

Post 37, in which I am a delicate flower

Moonflower
Most years I grow these.  Some years they
thrive and bloom with huge night-blooming
flowers that smell heavenly.  Other years they
don't.  I am starting seeds again this year
because the times they do bloom make it
worthwhile to try.  

On Tuesdays after my radiation, I'm scheduled to stay a bit longer to check in with my radiation oncologist and her oncology nurse to make sure I'm doing ok.  Lately the hip has been aching again, although the consensus seems to be that it's probably inflammation from the radiation itself (read: good pain) rather than pain from the cancer that is somehow returning mid-treatment (read: bad pain).

Unfortunately, the appointments this past Tuesday seemed to focus pretty directly on one thing: Do not under any circumstances overuse or otherwise physically stress that joint.  At all.  Ever.  For many, many months.

It was actually kind of funny.  My nurse told me I should be careful with my motions and should definitely not be using StairMasters or anything like that (ok, truth is, I've never, ever been on a StairMaster, so that should be easy advice to follow).  She also said the "hope" was that especially because I'm young, the bone would regrow and fill in where the cancer destroyed it.

My Radiation Oncologist told me that I absolutely must rest it because the bones will be very fragile for a long while.  I then asked my Radiation Oncologist if I could bike (While I don't have a StairMaster, I do have a bike.  Plus it's getting nice out.  Plus I generally think of biking as the non-impact exercise that isn't actually boring.)

That was, apparently, not the right thing to ask.  The shock was quite visible when she asked me, "You haven't been biking, have you?!?" in pretty much the same way you would say something like, "Please tell me you aren't really covering yourself in gasoline and then smoking cigarettes," (don't worry, I'm not) or, "Oh, dear, you haven't been wearing a deer costume to wander through the woods on the first day of hunting season again!" (don't worry, I haven't).

Truthfully, I haven't been biking at all, which is good, apparently.  I've actually been feeling bad that I'm not getting more exercise these days since I've been feeling better and I keep reading these stupid Twitter tweets from Dana Farbar about all the fabulous things people are doing to reduce their risk of cancer with a heavy emphasis on exercise (this morning I learned  from @DanaFarber: "Inactive women are at a higher risk of developing breast cancer, and women who exercise after #breastcancer have better survival." #SFSCWC, while yesterday I found out from @DanaFarber: "Dana Farber intern Alina finds her #WayToWellness by tap dancing. http://t.co/ow4WVlmhBj.").

I'd feel a lot better to be "off the hook" if I didn't feel quite so much like it was dooming me to poor outcomes.  But, as it sounds like my hip may be prematurely returning to ashes and dust (not literally, I'm just a little bitter and bitterness makes me melancholy.  Plus I like the sound of it.  And I went to Dana Farber on Ash Wednesday.)  

So, no tap-dancing, StairMastering, or biking for me in the near future.  But at least I haven't broken anything yet, so that's a blessing.

Now I just need to go unfollow organizations that send out cherpy wellness tweets that tend to depress me, at least for the next few months.

All sorts of updates

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well done, Wilhelm Röntgen and company, well done.

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

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

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.