My Beloved Enemies

Warning:  Chemopause and pain meds may not mix well.  Potentially politically and personally offensive post ahead.  Read at your own discretion.

Recently, a BC friend posted a link to an article about the standard/typical “Save the Ta-Ta’s” campaigns we’re all so familiar with.  I mean, c’mon – breasts are in our face everywhere, begging to be saved – boobies, ta-ta’s, chi-chi’s, you name ‘em, they are asking for help.  I commented on my friend’s post that while I don’t particularly like these campaigns I think they offer an opportunity, through a humorous intention, to perhaps educate and illuminate the masses about breast cancer.

On that note, an important point is made:  All of this is not about saving boobies –it’s about saving lives.  And I struggle internally with the fact that we can talk openly about saving boobies, but we admonish women for breast feeding in public because it’s disgusting or inappropriate.  Breasts are for fun, and nothing more.  To wit:  Boobstagram (http://boobstagram.fr) is using pictures of breasts in bras (apparently very nice, round, young breasts visually appealing and unfettered by scars or divots from surgery, both still beautifully intact) to raise awareness about breasts.  Er, I mean, breast cancer.  Their tagline is, “Showing your breasts on the internet is good, showing them to your doctor is better.”  Osocio has a great commentary on Boobstagram (http://osocio.org/message/boobstagram_cleavages_against_cancer/)  Here’s another blog that talks about Boobstagram, but from the viewpoint of a testicular cancer survivor (http://www.amptoons.com/blog/2012/04/25/save-the-body-parts/)

I own and proudly wear a “I heart Boobies” bracelet because my son gave it to me, and because he loves me, and he’s showing me his support.  I also wear it because I have yet to find a bracelet that says, “Save your life, get a mammogram” or “Become breast friends with your girls” or “Give your breasts a good hug – and a good feel – today.”  Because those are the messages we really need to get across.

This battle I fight every day is not about saving my breasts, but about saving my life.  I say I would happily give up my breast(s) if it meant living.  And on the highest level, that’s true.  But what’s also true is that my breasts are my beloved enemies.  I love them so very, very much.  They nursed my children when they were young; they have given me so much pleasure over the years.  My husband loves my breasts more every day.  They make my shirts look great, and bathing suits even better.  At 48, I still love the way my breasts look; I’m not ashamed of them, even now with multiple scars and bumps.  I would give them up, but I would feel as though an important part of me was missing, too.  I don’t believe my breasts make me a woman, or even feminine, or sexy or important or vital or of value and worth.  But they have been an integral part of many aspects of my life, and they are important to me.

My grief at losing them – even to save my own life – would be painfully real.

So I continue to support ta-ta’s and chi-chi’s and boobies, if for no other reason than it gives me an opening to talk about my story (and I tend to use the dreaded word “breast” when I talk about my cancer – my mother always said I should use appropriate terminology.  That’s why I love to say the word “vagina” so much, too).  It gives me a chance to talk about the reality of breast cancer, how we can detect it, how we can’t depend on mammograms and sonograms but mostly on our own hands – or those of our lovers, or doctors – to find those little lumps that change our lives.  We need to depend on our eyes, too, to notice skin dimpling or nipple discharge or change in size or shape, or change in color or texture. 

I couldn’t care less about saving my boobies - mostly.  I do wish we had better catch-phrases for talking about breast cancer/life saving, though. 

And Boobstagram can kiss my beautifully perfect imperfect breasts - and my ass.

Chemopause

My new friend Mildred visits me often - sometimes I meet up with her at Meijers or Target, or when I'm trying to get some work done outside, but most frequently she bothers me in the middle of the night.  I don't particularly like Mildred - she's nice and all, and doing her job by visiting me, but I am really looking forward to ending this friendship.

Mildred is what I've fondly named my hot flashes specifically, and my chemopause in general.

Chemo has put me into early, forced menopause, and when I officially stop chemo (May 24 is my final treatment) Mildred's visits won't end.  No, no they won't, because after chemo I am slated for five years of Tamoxifen, a drug designed specifically to induce - wait for it - wait...for...it - menopause.  So Mildred's visits will continue.  Bitch.

You've read along the way that my tumor is ER+, which means it has estrogen receptors, which also means that estrogen "feeds" the tumor.  The job of the Tamoxifen is to knock out all estrogen in my body to keep the cancer from returning, or any stray original tumor cells from growing (although I'm doing my best to get rid of those "original" tumor cells with all this chemo and radiation).  If I were post-menopausal already there would be no need for (or perhaps less need, depending on what my body was producing) Tamoxifen.  No, because I'm still young (there's that crazy word again!) and pre-menopausal, I get visits from Mildred.  Again, I say - bitch.

But it occurred to me last night that chemopause doesn't cause simply hot flashes - it's also creating alot of emotional, physical and psychological side effects that any woman enduring menopause would also be experiencing.  I am moody and irritable (irrespective of the steroids - that's a whole different story), and find my temper shorter than usual.  I cry at the drop of a hat.  My memory is suddenly shot to hell, and sometimes my brain just does not focus (moreso than the usual, "Oooh, shiny object" problem I've had all my life).  I really am just slightly depressed, and hoping and praying that the upcoming spring/summer will help alleviate some of that.  And I'll just leave some of the more intimate physical side effects to your imagination.  Mildred, you truly are a bitch.

I'm certain that part of what I've been feeling lately has to do with the fact that my physical activity level has decreased considerably, but I cannot risk the germs at the gym and the weather has been less-than-cooperative.  I'm working on that, too, as much as possible, hoping it will help.  I have my first 5k race of the season coming up on May 20 - the Sunday before my final chemo - and while I'll likely crawl across the finish line, I will finish.  I'm sad that I'm missing the Survivor Lap of Jackson's Relay for Life this year because I will be working out of town, but there will always be next year (yes, there will be a next year for me). 

So, I'm working on embracing my relationship with Mildred; she's going to be around for a long time, so I might as well try to be her friend.  Because she's doing her best to make my life a living hell - might as well kill her with kindness (and beat her with a big stick when she turns her back).

The Bravery of Being Out of Range

It's easy to be brave when you're not staring death in the face.

Recently, someone told me I was strong and brave for continuing to work and go to school while in treatment.  Being called "brave" is hard for me to hear, because I’m not.  I'm not facing my own mortality – that’s “out of range.”  Enduring treatment is less about being brave and more about doing what needs to be done - what anyone else would do or has done - in the same position.  For me, I don't feel brave for sitting in an infusion chair, or getting out of bed and going to work, or making it to class, or living each day as much as possible.  It’s just what needs to be done.

Yes, I am afraid of dying; yes, I am not ready to die.  Yes, I know we're all going to die some day (see previous posts), but today is not my day.  It's not my day because today, my diagnosis says so.  It could be my day in months or years, but not now. 

When I was first diagnosed, I could not get the thought of dying out of my mind.  I had lost two people I cared about just months before to cancer; it seemed to happen so quickly, so suddenly, and I was selfishly so very, very afraid.  As I started to feel better about my diagnosis we learned of my potential recurrence rates and again, my anxiety soared.  Now, months into treatment, I am at a point where somehow I've found some peace with what is, and am trying not to focus on what could be.

I ran into one of my favorite “little guys” (I believe he’s 10) last night; he hadn’t seen me since before treatment, and he said, so very sweetly and genuinely, “I’m really sorry about your cancer.”  I thanked him for his concern and told him I was feeling better, and that I really was okay.  His comment reminded me that it’s not bravery that keeps me going every day – it’s the blessing of being alive to fight another day.

Better Living through Pharmaceuticals

In general, I hate medication.  I hate taking Tylenol - would rather endure the headache or muscle ache than put drugs into my body.  I don't like Nyquil or Dayquil or porcupine quills for that matter - if I have a cold I tend to just suck it up and let it run its course (I might whine a little, but not much).  I don't head to the doctor for every ache and pain, even when I probably need antibiotics or a shot in my butt.  My GP often gets a kick out of the fact that I have not taken any prescription medication in many, many years and finds my outright refusal to do so contrary to many of his patients' expectations.  I prefer to try and manage something without medication when possible.

Four years ago I fell down the stairs and broke my wrist in several places.  Putting Humpty Dumpty back together again required surgery, pins and a plate - and some pretty heavy-duty pain meds.  I'd never taken Oxycontin nor Percocet before - and I got to take both, at the same time, for days after the surgery.  I then switched to Vicodin, and learned fairly quickly that I have a high tolerance for pain medication.  Where one or two 500 mg pills will work wonderfully for most, I was swallowing 4 pills every six hours.  Every day.  For a month.  Eventually I realized I needed to back off, to slow down, to wean myself off the pain meds because I could no longer function, work, drive, think.  I had never been so glad to throw out a bottle of medicine in my life.

In that time period I've avoided meds like the plague - I might have taken a couple of Motrin after a particularly difficult run - but in general I shy away from pills.

Now, of course, I have a pharmacy on my bedside table, a little line of pretty bottles with child-safety caps and a variety of shapes and sizes and colors inside.  I have anti-anxiety meds and steroids and sleeping pills and allergy meds and heartburn meds and...

...pain meds.  Again.  Dammit.

I have been repeatedly told that Taxol does not cause pain.  I hear this from my doctors and NPs and professionals around me.  I do not, however, hear that from other BC patients taking Taxol, because so many of them are experiencing pain, particularly those of us doing dose-dense treatment.  After my first treatment, when I landed in bed for several days because of the pain, my MO suggested Tylenol or Motrin.  I laughed outloud, then cried, then said, "You've got to be kidding."  The next day my friendly clinical trial coordinator secured me a script for Vicodin - just enough to get me through about four days of really good pain.  I worked hard to make them last an entire week because, well, I hurt for an entire week.  I refilled the script and used it again to get me through the second treatment.  And then they were gone.

When I went in for my third treatment last week we talked about the pain again.  I indicated it is getting progressively worse; the cumulative effects are starting earlier and lasting longer (and this week has been proof of that, in spades).  I expect the pain now so it's not a surprise, which makes it that much easier to deal with.  But my legs sometimes fail to work, and the pain in my hips and back make it impossible to stand up straight enough to walk.  My ankles feel like they're bearing the weight of the world, and the neuropathy has affected my feet so that walking just plain frickin' hurts.  Regardless, I make sure I do something, every day, to keep myself moving, even when it hurts and I really don't want to.  Even if I walk up and down the driveway, I have to move - I know, in some way, that it helps.

I asked for a refill on my pain medication last week, and my NP was genuinely surprised.  "You had a refill" she reminded me - and I told her I had already used it.  Again - surprise.  As they started pumping me full of toxins the nurse brought me a script with one refill, and it was pretty clear that this was to last me through the next four treatments.  Which isn't going to happen, so we'll be having another talk sometime soon.

I am not a junkie.  This is not drug-seeking behavior.  I'm not making this up because I love getting high on pain meds.  All I want to do is manage the pain I have.  And yet, pain management is not a topic of discussion with my medical staff unless I bring it up, and I push for it, and I demand care.  I contend that I never felt healthier than I did the day I was diagnosed, and it has been downhill from there.  For me, right now, treatment is what hurts the most.

I can live with pain - it doesn't bother me that the neuropathy in my fingers means they are simultaneously numb and painful, or that my eyes and ears and mouth are overly-sensitive to anything they connect to, or that my skin often feels like it's on fire.  But I'm being pumped full of chemicals that are meant to seek out and destroy pieces/parts of my body, and that's gonna hurt.  I shouldn't have to live with pain that truly makes life in general unbearable...and I shouldn't have to feel like a junkie for asking for help. 

Cancer snob

Early in my diagnosis - when I was still struggling with hearing, let alone saying, the word "cancer" in conjunction with the words, "I have..." a friend pointed out to me that I was a snob.

"You're a cancer snob," is what she actually said to me.

"All you do is talk about your cancer, like your cancer is better than someone else's cancer.  Or like cancer makes you special.  You're a snob about having cancer."

I never thought of myself as a snob - not sure I still do.  I certainly don't think having cancer makes me better than anyone else, or makes me special.  It makes me...me, only with cancer.  It has become a part of my life, like being a mother or a student or a wife or an employee.  I talk about my cancer no more or less than I talk about school, or my wonderful husband, or my amazing children (always a favorite topic of conversation - just get me started!) or grandchildren, or my dear friends.  I talk about cooking and gardening and quilting and beadwork.  I talk about the latest novel I read, my least favorite textbook, the research paper I am writing.  Cancer is now just another topic of conversation amongst the myriad of other things I can also talk about.

As often happens, people will say, "How are you doing?" when we meet - and I often reply with something along the lines of, "Doing great, how about you?"  Even on those particularly bad days, I often say, "Every day's a good day, some days are just better than others"  I rarely say, "I'm having a really shitty day and just want to curl up in a ball and die."  I'm not being disingenuous, rather I know that most people don't want to hear the long, drawn-out details of how I'm feeling, of my physical limitations, of my pain, of my fears.  And I don't necessarily want to share those details, either.  There are a couple of friends that I actually can say those things to - they are kind and gentle and I appreciate having a should to cry on sometimes.  I try to keep so much of this to myself because I don't want my cancer to define me...but it has a way of being more than just "another part of me" - it often becomes all about me, or maybe I become all about it?  It can be hard to separate myself from this disease, when almost everything I do is, right now, related to treatment and survival and just getting through another day.

I have joked about being a cancer snob since that particularly friendly diagnosis.  I say it (always to myself, mind you) when someone says, "I know exactly how you feel," because no, you don't.  Not one of my BC friends have ever ventured to say they know exactly how I feel, even when we have the same diagnosis, when we're enduring the same treatment, with the same side effects, with the same potential outcomes, when we share the same hopes and fears and tears and frustrations and anger.  I find myself saying it (still, to myself) when someone shares their story of a cancer scare and they "know what I'm going through."  I am always genuinely grateful and happy for them that they are healthy, and not battling this beast (and I usually throw in a quick "Keep getting your check-ups" too because, well, I say that a lot these days).  So perhaps, on some level, I am a snob.

I never think it or say it when someone shares the story of losing a loved one, or of sharing this cancer battle with anyone they know or love.  Everyone has been touched, in one way or another, by cancer - big or small, simple or complex, with a multitude of outcomes.  I am never upset when someone shares the story of a friend or loved one who has passed away from cancer, even when it's breast cancer - that happens, it's part of the reality of it, it's not insensitive to tell me about these things.

I created this blog to talk about my experience.  It's a place to share my cancer journey.  So yes - I talk about my cancer, sometimes like an enemy, sometimes like a lover, always as a part of me.  I try to use this blog as a way for me to "get it off my chest" (no pun intended) so that it's not a part of my everyday conversation with ever person I meet.  I strive, every day, to not talk about this, to make my life all about living, rather than treatment or fear of dying.  I'd rather talk about how good I feel, rather than how much pain I'm in.  I'd much rather never talk about cancer again - but it's a part of my life right now, and it's an important part of my life right now.  In some ways, it is my life right now.

So maybe my friend was right - maybe I am a snob about my cancer, in some ways.  Maybe people are tired of hearing me talk about this journey, and I can appreciate and respect that.  Perhaps I need to be more sensitive to others' feelings, and work harder to not talk about this.  Maybe this blog needs to be the place where I talk about what and how I'm feeling, and if someone doesn't want to hear about it, they simply don't have to read it.

Because in the end, if I'm really going to be a snob, it's going to be about something important - like those Prada shoes.

Yes, we're all going to die, but...

One of the most interesting comments I have heard from people since my diagnosis has been, "Well, we're all going to die someday."  Even my original oncologist said, during our first appointment, "There are no guarantees in life; we all die." 

This is a reality that most of us choose not to think about, deal with, or examine closely until we are forced to.  And even then, we still avoid-avoid-avoid as much as possible, because really, who amongst us wants to die?  Who looks forward to leaving behind their loved ones and their lives, even if what we believe it means peace and happiness on the other side?

I have a friend who calls herself ChemoBabe (and she really is).  This morning, she posted something that I thought was fairly profound, and I want to share it here:

"My friends with metastatic disease are on my mind today.  Let's get one thing clear. 'You never know how you're going to die. You could get run over by a truck' is not helpful.  Having mets is like standing on a sidewalk and watching the truck come at you in slow-mo. You have a lot of time to contemplate all kinds of details about how it will hit and how it will feel on impact. This is not the same thing at all."

I cannot understand fully this comment, because I do not have metastatic cancer.  Let me repeat that - I DO NOT have metastatic cancer, so don't get the wrong impression.  But her comment struck me anyway because so many people have said some derivation of, "You're going to die anyway" or "You could get hit by a bus tomorrow" since my diagnosis.

This is true.  I could get hit by a bus.  In fact, funny story - I once narrowly missed being creamed by a bus on a business trip to Denver.  Walking along the edge of the sidewalk I stumbled off, just as the city bus was pulling up to the curb to stop.  I remember the words vividly and loudly in my head, but I don't know where they came from:  "Don't move.  Do not move."  And so I didn't.  But I lost some hair as the bus's mirror gently grazed my head.  Ask Steve - he was standing right next to me and thought I was a goner.

But (as usual) I digress.  Except that I understand there are no guarantees in life - if there were, I wouldn't be sitting in an infusion chair right now, getting started on my seventh of 10 chemo treatments.  No - I'd be in perfect health and mowing my lawn and planning my summer and writing my research paper. 

And I understand that everyone is going to die someday - but now is not my day.  I come from a long line of long-lived family members:  my great-grandfather was 99-1/2.  His daughter, my grandmother, was 81, if I remember correctly, but had smoked heavily for most of her life - never got lung cancer but finally did get emphysema in her late 70s.  My parents are 77 and almost 79, and even with associated health problems they are still going strong.  So why, at 48, should I be dealing with this shit?

There might be truth in saying "There are no guarantees."  But for someone dealing with cancer, there are many unknowns to be contemplated.  Even with chemo and radiation I have a high metastatic recurrence rate.  Do I want it to come back?  Hell no!!  Do I think it'll come back?  Maybe.  I can't say No as much as I'd like.   I have to accept that possibility.  And so while I'm not watching the bus coming along in slo-mo, I have to prepare for the fact that next time, there won't be a voice in my head saying, "Don't move."  If it comes back, I'll deal with it then.  

So I ask this of all of you, please:  Try and remember, next time to talk with me, or someone else, or even to yourself - yes, we're all going to die someday.  But it doesn't make me (or anyone else) feel any better to equate the transit system with the uncertainty of our future.  Because sometimes, you can not move and just lose a few hairs; other times you stumble and fall, all your hair comes out, and you die.  

I'd still like to believe that bus has passed me by.

Changes...they are a-comin'

Tomorrow will be the third of my 6 Taxol treatments.  All told, I will have completed 7 of 10 chemos.  7 of 10!!  Back in January I never thought I'd be close to the end, let alone already there.  It's funny how fast "forever" can really pass. 

As chemo moves towards completion, we start to focus on radiation.  Five days after my last chemo I will have my radiation "simulation," where the radiation oncologist (RO) will determine exactly how best to radiate my breast while avoiding my heart and lungs as much as possible.  Radiation has come a long way in the last 50 years, and the ability to target a small area is remarkable.  Once we've determined the best course of action I'll start 30 sessions of radiation, five days a week for 6 weeks.  I hope to be done by the end of July so that, perhaps, I can have a few weeks to recuperate before school and my internship start in September.

My plan, of course, is that radiation will be the end of the "big" courses of treatment.  I will be taking Tamoxifen for the next five years so treatment technically will continue for many years.  But the "biggies" - chemo and rads - will be out of the way.  That's my plan.

There are some changes I have made, or am making, or will be making, in an effort to reduce my risk for recurrence or metastases.  First, I stopped drinking.  This proved to be more difficult than I expected, since Ken and I have really learned to enjoy wine over the last several years, and make annual trips to wine trails and particularly special vineyards.  Will liquor ever pass my lips again?  Maybe once or twice a year, in small quantities.  Why quit drinking?  To lessen the burden on my liver, where BC has a habit of metastasizing.

Second, there will be an elimination of white and refined sugar.  You may think this is easy, but a lifetime of sugar-induced happiness means changing not just how I eat, but how I think.  I love me some Ben and Jerry's; I could easily live on Peeps and Robin Eggs.  And licorice is and Good N Plenty are a food group, as far as I'm concerned.  Oh, how I will miss Peppermint Mocha coffee creamer.  Don't get me started on french toast from good, homemade challah bread, either.  Those will become a distant memory, and I admit to being sad about that.  Studies have shown that sugar can fuel cancer growth.  Some suggest an Atkins-like diet; others suggest an even more radical ketone diet.  I'm not sure I can do either, but I feel that eliminating sugars decreases my chance for recurrence. 

While I haven't been able to exercise much of late, I know that running and yoga will be helpful in maintaining my weight (excess body fat can also fuel cancer growth) as well as keeping my body healthy and young(er).  Actually, now that the weather is nice I hope to get out and at least walk (or crawl) every day, as much as possible.

Let's be honest:  I have no history of BC in my family, and my cancer was pretty aggressive to begin with, so who knows where this came from, and what the future holds?  But if I don't try, I don't make changes, I don't do everything I can do to keep it from coming back, I am cheating myself out of chances.  If it comes back, I know it won't be my fault, but there will be a part of me that wonders "What if?"  What if I had stopped drinking, or eating Twinkies, or had started running again?  If I make these changes, then I can think, "At least I tried." 

That's all I can do, is try.  Because every day another friend, another acquaintance, another person I know has a recurrence, finds a spot on her liver or lungs or bone or brain, goes from Stage I to Stage IV.  I can't make any promises - I can only try.

One little eyelash...

A couple of posts ago I noted that "Taxol treatment is a beautiful thing."

I am mature enough to admit when I'm wrong.  Especially when I'm very wrong.  Very, very...v-e-r-y wrong.

The steroid regimen staved off the worst of the pain for the first three days - until I stopped taking the steroids, at which time the pain flooded back again.  Muscle spasms, bone pain, imbalance, confusion - it all came back with a vengeance on Monday night.  I snuck out on Tuesday for lunch with a dear friend and a quick Meijer run.  Funny story - I almost fell over walking into the store because my balance is so off.  I felt like a drunken sailor, stumbling sideways and trying to remain vertical while grabbing on to a cart to keep me upright.  I'm sure those around me wondered what alcoholic beverage had spiked my morning Wheaties (I might as well laugh at myself because I'm certain at least one Jacksonian out there is doing it, too).  Today brought more balance issues but the pain is retreating, just a little.  I am hoping for a peaceful night's sleep and a good day at work tomorrow.

Yesterday brought another surprise - my eyelashes are falling out.  I lost my hair during the AC treatments, as expected.  My eyebrows thinned, but never to a truly noticeable point.  As I whined and cried yesterday (again) about all this crap, I went to wipe my eyes - and found several eyelashes on the tissue.  I ran to the mirror to look, and there they are - three lone eyelashes in the middle of my upper left eyelid.  One on the bottom.  A couple more on the right side.  My eye itches and - viola! - another one falls away.  I am more shocked losing my eyelashes than I am my hair, for some reason.

I am totally starting to rock this Uncle Fester look a little too well.  But hey, if they don't grow back, I'll go for the rhinestone look - I wonder if Prada makes fake eyelashes???

A box of hearts...

A mystery box was delivered to our doorstep this afternoon.  "Scholastic Books" it says on the outside, and I fondly remember the Scholastic book fairs at school and how much fun there was to be found inside a book box...but now?

I recognize the name on the return label - Lorelei, a friend of Ken's, a runner he met a few years ago who is an elementary school teacher.  We've been working on trying to get together for lunch but I just never seem to be able to keep myself upright long enough to drive to catch up with her and her partner in crime, Kelsey, to plan our Komen run in May.

But here's a box from Lorelei, so when Ken comes home we open it together.

Inside is an adorable, warm and comfy hand-knit hat along with a beautiful wooden bracelet, and a note.

Underneath these beautiful gifts, however, is a box filled with Valentine's cards. "I planned on giving them to you at our Chili's date," she says, "but we still wanted you to have them!  The cards are from my 4th graders.  Just a small way to show you we are thinking about you, praying for you, and admiring you for how strong you are!  Keep fighting!"

A box of cards from children I have never met, who don't know me but are thinking about me.  Their cards are beautiful and genuine and honest and sweet.  They know that I run, and that I have cancer.  And that I'm fighting.  

 

They share their hopes for me to recover, to stay strong, to eat chocolate, to be happy, to live life, and for my dreams to come true.  What they may never know is that their construction paper cards and hand-cut hearts have left an indelible mark on my own heart.  They remind me that everyone matters and that we are all connected to each other, even if we don't realize it.  Those little things we do every day really do make a difference in the life of someone else, even if we never know it. 

A box full of hearts...a box full of love, and laughter, and light, and hope.  And so very, very much strength.