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.

2 years, by the numbers

George Bellows - Stag at Sharkey's

Today marks the 2 year anniversary from my first (stage III) cancer diagnosis--go me!  In honor of this occasion, besides patting myself on the back just for being here, I've decided to do a "by the numbers" of the past 2 years of medical things.

In the past 2 years there have been:

• 420 days between ending active treatment for stage III and being officially diagnosed with stage IV
• 394 days wearing my lymphedema glove and sleeve (I usually don't have trouble as long as I wear them, so it looks like my hand and arm have problems but it's not really so bad at all)
• 393 days on Tamoxifen 
• 220 days of full or partial baldness
• 116 days between first appointment about the hip pain to stage IV diagnosis (time included multiple types of scans, several appointments and a biopsy)
• 46 days of radiation therapy (28 to the mastectomy site in 2012, 18 of 20 to the hip this time around)
• 8 doses of chemo (given over 16 weeks)
• 8 tasty pastries because my husband bought them for us during each and every chemo
• 8 injections of Neulasta (to increase white blood cells the day after chemo, and a huge thank you to my in-laws who picked me up and drove me to 7 of the 8, only missing the one that coincided with their grandson's out of town wedding.  Zero is the number of in-law jokes you'll ever hear from me because mine are the good kind of in-laws)
• 7 days in the hospital
• 5 surgical procedures (bilateral mastectomy with immediate reconstruction, port in, unrelated to cancer kidney stone that they blasted and took out through a hole in my back--some girls have all the luck!, port out, reconstruction revision)
• 5 kinds of pain killers (strangely enough, some work better for different kinds of pain than others, who knew?)
• 4 CT scans (not including the radiation oncology planning or the CT guided biopsy, because enough is enough, and besides, if you aren't drinking barium smoothies, it probably doesn't count)
• 4 cancer pathology reports (1 for each biopsy, 1 from the surgical sample, 1 from Dana Farber)
• 4 Faslodex injections (but given 2 at each appointment)
• 3 MRIs (breast, brain, spine)
• 3 flu shots (much less time consuming than those MRIs)
• 2 genes not found to be mutated (those BRCA1 and 2 genes you sometimes read about)
• 2 PET-CT scans
• 2 cancer diagnoses (stage III and stage IV, same cancer, though)
• 2 clinical trials (actually enrolled, 2 more that didn't pan out) 
• 2 Xgeva injections
• 2 X-Ray studies (I think one or both of those studies was more than one view, but I'm not going to quibble)
• 1 biopsy (this is the bone biopsy for the IV diagnosis, the core needle ones for the stage III were, of course, before that diagnosis)
• 1 echocardiogram
• 1 wig
• 1 ER visit
• 1 bone scan
• 1 Lupron injection
• and definitely more appointments than I care to count

But, on the other hand, worth noting that over the same 2 years there have been:

• 1 school play
• 1 first house for my stepson and daugher-in-law
• 1 well deserved promotion for my stepdaughter
• 1 new grill for my husband and the will to use it often
• 2 birthdays for me
• 2 birthdays for my husband
• 2 birthdays each for my daughter, stepkids, daughter-in-law
• 2 wedding anniversaries
• 2 summer gardens
• 2 Christmases
• 2 Easters
• 2 of every other holiday big and small
• 2.5 youth sports seasons
• 3 visits from my out of town stepson, including 2 surprise visits because these kids are awesome that way
• 731 days of being alive 

Because I am still here and that is 2 years (and counting) where cancer doesn't get to win.

Take that, stupid cancer, take that.

A short update

This is going to be a short one because I'm not feeling well today.  Earlier this week I had a sore throat, which is one possible side effect from one of the things they're giving me.  Then was sneezing and my nose started running, which seemed like allergies.  And my muscles ached, which is another possible side effect of one of the things they're giving me.

But the following day it was pretty clear that I had a nasty head cold.

Not that I thought cancer would make me immune from the rest of real life situations, but I was kind of hoping.

Instead, I took the day off from work to rest, washed my hands a lot, and was feeling better enough to go to get my next Faslodex shots on schedule (don't worry, I was very careful with handwashing and Purell and wasn't actively coughing or sneezing by that time).

When I got there, my oncologist came by to explain that some of my tests came back and I'm still feeding that cancer too much estrogen, but they do have a way to fix that and help me do a better job of starving the cancer into submission.  It's another drug (Lupron) that's (wait for it) injected monthly.

The funny thing about Lupron is it's also used for men with prostate cancer and so the package has on it this photo of a smiling older man that is, I suppose, supposed to be reassuring for older men with prostate cancer.  For younger women without prostate cancer, it's a whole lot closer to silly (with a possible side of creepy) than reassuring, in sort of a "thank you older man who's joyfully working through prostate cancer but your reassuring services are not needed here" kind of way.

Different dose of Lupron, same happy, smiling Lupron guy.

For those of you still playing cancer treatment bingo at home, we're now up to  Xgeva, Faslodex, and Lupron, all (after some loading doses) injected monthly.

I know cancer doesn't give you bonus points for effort or dedication, but I feel like I should at least get a few days off for learning what all of this stuff is and means and extra credit for knowing how to pronounce "Xgeva".

Instead, although I was feeling better the last couple of days, I think maybe the physical stress of the shots is messing with my immune system because I'm back to feeling like I have a head cold again.

But at least I can sit and rest, and as I sit and rest, I get to feel insufferably virtuous for having all that anti-cancer stuff going to work for me while I do.  And, while I'm sitting here and feeling insufferably virtuous, I also know that head colds don't really last that long, so I will rest and be insufferable for a day or two, and then get back down to business (and yes, family who is sweetly putting up with me without complaint thorough my insufferability, that's a promise).

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.

So, this thing called hope

Source: www.Sacredart-murals.co.uk
(and yes, that is a real website)

When I was diagnosed the first time, I received a book called No Place Like Hope from a breast cancer charity.  The book started out, as I recall, with the author's story of how her first oncologist was lousy and wrote her off for dead and she felt terrible and was crashing both physically and mentally--I think the book must have gotten better or else why send it, but at the time I found it so depressing I gave up on it and threw it out right then and there.  At least the book was mailed with a grocery gift card so I did get some milk and broccoli out of the deal.

When I first made the appointment for my second opinion, the woman who helped me make my appointment told me I had to keep positive and not lose hope because that was the most important thing.  Now, for my money I think quality medical care is the most important thing, but hope is nice, too.

When you have cancer, "Hope" just seems to come up a lot.

I feel like I'm so over the whole "Whoo-hoo!  Lots of pink and we're going to beat this thing!" hoopla (I may have been born a bit cynical--your mileage will obviously vary and, sure, someone must like that because goodness knows there's enough of it going on), and I'm very distrustful of "Hope" for the sake of hope.  Plus, while I'm all for not being a downer all the darn time, I don't seem to have it in me to believe that hope is enough to cure anything (well, anything except hopelessness, but other than that...).

And still, for all my cynicism, I do have hope.  Really, I do.

There are things that I hope for, of course.  I hope to see my married stepson and his wife become parents on their own schedule when they feel ready (see, guys, no pressure!).  I hope to see my stepdaughter get married to the man of her dreams and have children of her own.  I hope to see my younger stepson finish college and get a job he loves, fall in love and get married and have his own children, too.  And for my daughter, I hope to see her graduate high school and then go on to do all those things I want for her brothers and sisters, too.  And, for my husband and I, I hope we will live out the rest of our days supporting each other and continuing to finish each other's sentences and know what the other is about to say before it's even said (Yes, we're irritating that way.  I once told my husband it was a good thing we married each other because otherwise finishing each other's sentences would seem really strange, to which my daughter piped up, "Plus, you have a really hard time explaining me."  Very true, baby girl, very true.).

Sometimes I feel like writing down what I hope for here is a bad idea.  It seems kind of depressing in a way, to be talking about things I hope for that may or may not be that realistic.  Several people have commented to me about how sad it made them to read one of my earlier posts where I'd thought I'd dodged the stage IV bullet only to know I hadn't really dodged a darn thing.  Sorry, guys, here I go again.

Still when I say I could be around for decades, I don't think I'm just spouting stuff.

Really, it's not so very unrealistic.  It will take a turn of good luck, of course, mostly that some of the treatments they put me on stop progression for a good chunk of time--that's really the key to this whole thing and it's what I'm hoping and praying for.

The basic treatment plan for me right now is to continue to take the Faslodex for a few months and then do some scans to see if it keeps the cancer stable or shrinking.  If it does, we continue like that indefinitely.  If it doesn't, we move on to the next treatment. But either way, we use the treatment and scan to see if it works, and then use it or something else again.

If I get a long time on Faslodex before it stops working, I'll probably be on another therapy that works to exploit the cancer's hormone receptor status.  If not, it may be on to chemo with the same exact goal:  use it, scan, continue or move on.

The hope is (yes, "hope" again) that each treatment will keep me stable for a while before it stops working.  Because each "while" adds up to time and life, which is, of course, the goal.

The good thing is, I don't really need Faslodex or any of the other treatments we have today to work forever (that's good, because nothing is really expected to), I just need them to keep me alive long enough to not run out of treatments before the next big treatments comes out.

I know, cynical me even knows it sounds a little delusional, I but I don't think it is. I have no idea what will or won't work in the future, but new things come out all the time.  This week's selection in the news is:

• Yttrium-90 shows promise in metastatic breast cancer
• Novartis to present early stage data on 19 investigational compounds at AACR annual meeting
• Will Pfizer unveil a breast cancer blockbuster this Sunday

(Drug companies and researchers tend to announce things at the big oncology conferences, and this weekend the American Association for Cancer Research has a national meeting.  It should be a great time for hopeful news for cancer patients, oncology professionals, and drug companies (and believe me, I hope those drug companies make a boatload of cash off of these things, which I'm assuming is what they're hoping for, because healthcare costs and Vlog Brothers aside, I'm ok with drug companies getting money for coming up with great new things that could keep me alive and I want them to have lots and lots of incentive to keep on doing it.))

I wish I knew what God had in store for me and my loved ones.  I hope His plan is to have me here on earth for a while yet to come, even as I know that may not be it at all.  But in lieu of seeing into the future (a skill I'm clearly very bad at--cancer?  didn't see that one coming), looking at hopeful developments and ways that this could go well are ok, at least as a start.

Somewhere between "Hope" as a catchphrase for "cancer patient should embrace this so they can be inspirational the way we want them to be" and "Hope" as a way to avoid dealing with scary things (which is a use, I have to admit, I may be sort of fond of,),  there really is "Hope" out there that comes from good things on the horizon that have some likelihood of coming out and helping me and people like me.

And, yeah, I hope it really does work out that way.

The kindness of strangers and friends

From The Atlantic

One thing I've found about having cancer is that so many people step in to show you how kind, loving, caring, generous of spirit they are.  For every story you hear about a person who was suspended for sporting a pink mohawk or shaving their head in support of someone with cancer, or fined for wearing non-regulation uniforms to raise funds or show support, or (more recently) made fun of in a national magazine for what they choose to wear while running a marathon while undergoing chemo.  I promise you there are at least a hundred more where people are amazing.  Absolutely amazing. 

I've been on the receiving end of this kind of heartwarming gesture, from offers of company and support, to prayers and warm wishes, to things from friends and family to remind me that they're thinking of us, to notes and cards and electronic messages from people who want to let us know they care.  It really does help lift me up.  Because people are amazing.  And the people I know are really amazing.

The Boston Marathon is coming up again, the first year since the marathon bombings.  Like pretty much everyone else, I was shocked and appalled at what the Tsarnaev brothers did, but I was happy to see the way pretty much everybody else sprang into action to save lives and support each other in the aftermath.  "Boston Strong" is now a thing, not "Boston Terror" or "Boston Broken" or "Boston Cowering."  Just Boston Strong.  Because for every single Tsarnaev, there are at least a hundred more people who are truly amazing.

I don't ever claim to be personally as strong as the collective strength that is Boston, but I find the outpouring of goodness very uplifting.  It mirrors what I feel about the outpouring of love in my own life.

The other day I got an interesting email forwarded to me from my brother with cancer that I'd like to share part of here.  I hope you find it as uplifting as I did. The person who sent it to him is on of his coworkers and this is what she said:

Hello All, 

I'm running in the Boston Marathon to support fundraising for Dana Farber's Barr Program which supports researchers looking to develop new cancer treatment methods. Please consider supporting this effort.

This message is a little personal, which I think is why I've had so much trouble writing it and getting it sent out, so feel free to skip to the end where the donation link is. :) 

I remember when [the brother who emailed this] found out that his sister had been diagnosed with breast cancer. It didn't take him long to decide that he wanted to run Boston to raise money to fight cancer, which I thought was a pretty cool idea. 

Unfortunately, before any progress could be made on that front, [brother] was diagnosed with cancer himself and began what turned into a long process of treatments. 

I thought then that I would like to run Boston for [brother] and for his sister. I pulled up some applications for the charity teams and looked through them, but I was intimidated by the high fundraising goals and, as someone who had never run more than two miles consecutively,  I had no idea if I would even be able to finish the race. I decided to work a little on running before taking the plunge. 

A year later, after watching someone that I care about go through treatments and prognoses that were hard for me to deal with (and I wasn't even the one living with them!), and unfortunately also after the loss of another one of the bright lights at the office, I could not be more ready to raise money to support an end to cancer. 

I'm really excited to finally get to run the Boston Marathon for [brother], for his sister, for [the coworker who recently passed away from cancer], and for the hope that someday my children will never have to experience the struggle with cancer that is too common today. 

How about that?  Pretty cool, right?

I think we all have that choice in front of us, to be selfish and cruel, to be decently normal, or to be amazing.  And I am proud and humbled to know (and to know of) so many people who choose amazing.