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.

Sleeping like a baby...

Yesterday was the second Taxol treatment - or, all told, my sixth of 10 treatments overall.

Whoo-hoo!!  Not only am I over half-way done, I'm officially on the downward slide.  Six down, four more to go!

It's a good feeling to be on this side of the mountain.  It's like running downhill, picking up speed as I go.  Every treatment is not just one step closer, it's leaps and bounds closer to being done.

Second Taxol treatment brought no ill effects or reactions during treatment.  As usual they start with Zantac and Ativan, then load me up with Benadryl.  That is the beauty of the Taxol treatment - three hours of sleep.  I wait until they start the Taxol - still worried about the possibility of an allergic reaction.  But pretty quickly I realize I'm not itching, and I can still easily breathe, so it doesn't take much for me to fall asleep.  I awake a short time later and ask Ken for an yogurt - I realized I hadn't had breakfast yet - and promptly fall back to sleep.  When I awake about half an hour later there's a blueberry yogurt waiting for me.  I sit up, eat my breakfast, and realize I have about another hour and a half to go - so back to sleep it is.  I awake long enough to order lunch, pee, eat, and - surprise! - drop back off to sleep.  Shortly before the end of treatment I'm awake long enough to pull my stuff together and get ready to leave.

Taxol treatment is a beautiful thing.

Yesterday was the first treatment during which I did not cry.  I was not afraid, I was not worried - about the treatment, that is.  For the first time, I didn't kick (accidentally or otherwise) the nurse as she accessed my port.  I smiled, I laughed, I called the nurses by name.  Maybe it's because I knew I was going to be able to sleep for three hours, but in general yesterday was incredibly uneventful.

I was given steroids to take for the next three days to help with the potential pain side effect.  I took my steroid this morning, and then watched the clock at 4:35 - the time two weeks ago that the pain started.  When I got home from work at 5:30 I took a Vicodin - was told it was better to stay ahead of the pain rather than wait for it.  At 8:20 I am feeling no pain, no soreness, no awfulness - just a little tired, which is to be expected.  So, for now, I have hope that I won't have the same experience I had two weeks ago.  Keep your fingers crossed for groovy good feelings the next couple of days (and minimal steroid psychosis!)

If nothing else I had a chance to read the new Hollywood edition of Vanity Fair.  I found a new pair of Prada shoes that I will buy when I am done with treatment (never to wear, just to worship), and read about "7 for all mankind" that is "imagined and directed" by James Franco.  I learned that Ermenegildo Zenga's new men's suit is meant to be balled up in a corner and worn completely wrinkled.  And that Marc Jacob's new skirt-and-blouse looks like something I made in 7th grade Home Ec, with an elastic waistband!  And that pale skin is the new tan.

And that sleeping for three hours makes the day so very much better, when you have to sit in a chair with toxins pumping into your veins.  It would be so much better with a new pair of Prada shoes, though.

Still alive and kicking!

My mother called me this morning, very concerned.  She had my latest blog posting from several days ago, in which I described how toxic my relationship with Taxol had become (pun intended).  She hadn't read anything since then, and had called me a few times but I had yet to return her call.

She was, as any mother would likely be, very worried. 

When I write about my experience, it's not with the intention of being alarming or causing worry.  Writing helps me process all that's going on right now; it gets it out of my head and gives me a safe place to keep it.  Writing also makes this all so very real - something I still struggle with from time to time.  It allows me to "see" it, dissect it, explore it, and even experience it from a different perspective.  Writing is more than cathartic; it has become necessary for me to get through this. 

So I apologize if what I write is concerning or upsetting - that's never my intention.  I appreciate being able to be honest, to share, and to have you with me during this incredibly interesting journey. 

An update with a funny twist:

My Sunday was horrible, my Monday was bearable, my Tuesday was better.  Wednesday I went to work at usual, but by the end of the afternoon I could feel the utter exhaustion about to hit so I left a little early.  On the drive home I started to feel chilled (it was in the 80's that day), which worried me.  I got home and checked my temperature, which was 99.5.  Still not the magic number (100.5) at which point I need to call the doctor, but high for me (my normal temp is 97.7).  Checked it again a few more times then went to bed.

Thursday I woke feeling achy but still a little better than the previous day.  Temp was still at 99.5 but I had lunch with a friend and checked out wholly-unaffordable but mouth-watering deck furniture at Lowe's.  Still feeling achy and a little chilly I check my thermometer - 100.1.  I call my nurse and leave her a message that my temp is climbing.  I get home and check my temp again - 100.6.  I've finally surpassed that magic number!  Laurie returns my call and asks me to come in for some tests - between the pains, chills and fever, they're worried about a systemic infection.  I check my temp once more as I leave - 100.8. 

I arrive at the office to be poked and prodded.  Right off the bat they take my temperature - 98.6.  "Impossible!!" I cry.  "It was 100.8 just fifteen minutes ago!"  As I wait in an exam room for the doctor I pull out my thermometer and check my temp - 100.6.  I pull out the second thermometer I have and use it, too - 100.6.  When Laurie stops in to tell me my blood work looks great, I show her the thermometers.  She looks at them, then looks at me, then asks, "How much did you pay for these?" 

"Like, $3 I think."

"Throw them away," she says.  "Now's not the time to scrimp; go buy yourself an expensive thermometer."

My blood work revealed that my white blood cell count is much higher than normal (for me, that is); my bone marrow is expanding as my WBCs are growing, which is causing some of the bone pain and flu-like symptoms now.  It also explains a fever (if I really have one) - but it's not a problem.  Just another one of those "happy accidents" that comes along with Taxol.

The weekend has been wonderful - minimal pain but still some fatigue.  Ken and I finally celebrated his birthday yesterday at the DIA - he received his very own one-year membership so he can visit any time he likes, gets a free ticket to any special exhibits, and a mad discount at the cafe and gift shop!  I lasted about two hours before needing to leave - just got too tired.  Today I spent an hour or so in the garden, drinking in the sunshine and feeling alive and human again.  Peanut and I made cupcakes for Grandpa's birthday celebration, and we had a chance to meet S's new boyfriend.  Ken made lobster mac-and-cheese for dinner, and now we're (im)patiently awaiting the Season 5 premier of "Mad Men." 

I waited for that magic Day 9 to arrive, to start feeling normal again.  I am learning (as I do every time I have a treatment) that I can hope, but never predict, which days will be good and which days will be less-than-good.  The cumulative effects are becoming evident and I am coming to terms with that.  I'm getting used to being tired, to being able to do less than I used to, but I realize that's temporary and won't last forever.  I can get through this - I will get through this - because I have the courage to do so.  And I have the courage to do so because I have the support of so many wonderful and loving people.