Second verse, same as the first...

It's been a long time since I've been here.  My last post was almost three years ago!!!  I haven't even been by to read or check for comments in over a year.  I'd started this blog to document my journey with breast cancer, and after treatment (and some scares), every day became another day of living without cancer.  In fact, life became beautiful and busy, filled with love and laughter and fun and excitement.  Weddings!!  Grandchildren!!  New jobs!!  Home improvements!!  Half marathon training!!  Travel!!  Yoga teaching!!  Hubby and family and friends...

You know - the stuff of normal life.

A couple of weeks ago was the fourth anniversary of my first chemo.  I was so busy Livin' that I actually forgot.  I remembered the next day, felt mildly nostalgic (and just a little naseous), and then the moment was over.  Move along...nothing to see here...

I had an appointment with my surgeon that Friday; I found another lump near the first area of cancer, but I'd had a cyst there a couple of years ago and we removed it and all was well.  My surgeon and oncologist continue to remind me - early stage, lots of tough treatment, go live your life and don't worry about recurrence, you'll be fine.  So I wasn't worried about the appointment with the surgeon, almost forgot, in fact, because I was so busy Livin'.

"So it's a cyst," I said to the surgeon (because I've been to medical school and I know these things).  "Let's poke it with a needle and be done with it."  He pushes it around, tries to pick it up, calls in another doctor.  They talk.  He shakes his head, sends me over to the hospital for an ultrasound.  The tech there takes her time and let's me watch the US screen; she's young and sweet and we talk about the weather and my daughter's recent wedding and what the HELL is that thing on the screen?  It looks like Jabba the Hut except a little uglier, all fat and jagged and dark and mean.  *click* there's one picture and *click* there's another and *blip* now we've got measurements of Jabba.  She wipes the gooey gel off Lucy and announces she'll "be right back."  

I lay there and think about my next long run - do I brave the cold and ice or just run the hamster-wheel track at the Y again (where 5 miles is 80 revolutions...oy...)  The tech returns with the radiologist in tow.  They whisper (by the way - that's just plain rude.  Secrets don't make friends...) and the doctor plops gooey gel on Lucy and does his own rolling search for Jabba......riiiiiight there.  And there.  And here's another view.  *click*  *measure*  And he announces he'll "be right back."

I'm a little slow sometimes, and just as it begins to dawn on me that perhaps this isn't just another cyst, the radiologist returns.  I hear words like, "solid mass" and "irregular borders" and "taller than wide" and "echogenic" and "shadowing", and he'd gone out to call my surgeon but the surgeon is in surgery so he calls the surgical suite to discuss this, and 

*boom*  There's that sinky, swaying feeling where all the air leaves your lungs and your head spins and your vision tunnels down to the lightswitch on the wall and words don't have meaning anymore and you can't really hear what's being said but the conversation goes on without you and the only thing that comes out of your mouth is

Fuck

Oops.  He smiles a sad sort of half-smile.  I tell him I've been down this road before so I ask, "Is it a 4 or a 5?"  He hesitates briefly, realizing I'm an edumacated cancer survivor and says, "I can't give it a 5 because that's a slam-dunk and I need a tissue sample, so I'm going to say 4c."

These numbers refer to the Birads rating system (Breast Imaging Reporting and Data System), which assigns numbers 0-6 to mammograms and ultrasounds as a means of standardizing reports and describing risk of breast cancer.  Anyone who's had a mammogram and received that letter in the mail may have seen the number, but it goes something like this:

0 = incomplete, more imaging needed

1 = negative findings

2 = benign findings

3 = probably benign (less than 2% chance of malignancy)

4 = suspicious (overall 20% - 35% chance of cancer, range of 2% - 95%)

In the 4 category are three sub-categories:

4a = low suspicion of malignancy (>2% - <10%)

4b = intermediate suspicion of malignancy (>10% - <50%)

4c = moderate concern, but not classic for malignancy (>50% - <95%)

5 = Highly suggestive of malignancy (95% chance of cancer)

6 = Known malignancy

He tells me he'll write the US report that weekend and fax it over to the surgeon so he has it first thing Monday morning.

And so the Long Weekend Wait begins (cue the violins...)

Ken and I - we Know, with that capital K of Knowing.  Been here before, Knowing before being told.  It's not reactionary, it's not catastrophizing - it's simply Knowing.  So we let it go for the weekend.  We run, have fun, go shopping, keep busy Livin'.

First thing Monday morning the phone rings - and doesn't stop.  The oncology NP calls to say they've seen the US report and wants to schedule a "planning meeting" with the Oncologist.  "But I don't have a diagnosis yet, what are we planning?"  She says they want to get the scans on the books, talk about next steps...  "But I don't have a diagnosis YET," I say again...  I leave her with the promise to call when I schedule my biopsy.  

The Oncologist's assistant calls to schedule an appointment (can't dodge that bullet apparently).

The surgeon's office calls to schedule the biopsy for Wednesday.  Then the hospital calls to pre-register for the biopsy.  Then another hospital staff calls to go over the biopsy procedure and pre-requirements.  "No bloodthinners for five days before the procedure...well, nevermind since we've only got two days.  Just don't take any Tylenol or aspirin or anything before then, okay?"

Okay.

The biopsy is an ultrasound-guided vacuum-assisted biopsy.  Let's just say that Lucy is numb from stem to stern; a small incision is made and a very large needle is inserted to take core tissue samples of the tumor, four in all.  They allow Ken to stay in the room and he watches (in fascination, of course) from the corner.  When it's over they insert a small titanium marker and then send me for a mammogram to ensure they can see the marker.

The oncology nurse navigator comes to visit before the mammogram.  We have a few minutes to talk about what all this means.  She lets me know they're level of concern is "up there".  We laughingly agree this sucks.  She tells us that it'll take at least two days for results - which likely means another Long Weekend Wait.  But since Ken and I already Know, we just get back to Livin'.

Ken reminds me later, however, that our GP has Saturday office hours, and so we pop in for a quick visit on Saturday morning.  And sure enough, the results are in.  No one smiles as they print and copy and stamp the report.  Oh well - we had a little bit of hope.

So all of these words, the telling of this super-long story, is to let you know that the biopsy is positive for breast cancer.  Not only is is positive, but it's also negative - as in, no estrogen receptors, no progesterone receptors, so it looks like this:

ER-, PR-

Okay, so now we freak out just a little.  This is not a recurrence of my previous cancer, which had estrogen receptors (ER+).  This is a new, completely different breast cancer.  But it's a new cancer exactly next to the place of my previous cancer.  It's been in there for a while - maybe through previous chemo and radiation (including targeted boosts to that very area).  WTF?

We're still waiting on another piece of important information - the results of the Her2neu testing.  That is the last of the three hormone receptors that completes the picture and tells us what treatment is necessary.  If the Her2 is negative, then I have Triple Negative (TN) breast cancer.  Being ER- means my cancer is not being driven or affected by estrogen, so Tamoxifen or other Aromatase inhibitors, which are significant and valuable treatment options in breast cancer, will not benefit me.  If the Her2 is positive, then I will need to add Herceptin and possibly Perjeta to my chemo regimine.  TN is often associated with a BRCA1 or BRCA 2 mutation, so I may finally get the genetic testing I'd asked for four years ago.

So there it is.  It really does kind of suck.  We don't have a treatment plan in place just yet.  Chemo, surgery, reconstruction - it'll all come together soon enough.

But for now, we take a few moments to absorb all this new, different, interesting and (yes) scary information.  And we keep on Livin'.

It's what I know how to do best now.  And I'll do it again soon, real soon.

Happy Chemoversary to me!

I don't post much anymore.  Two months since my last post, in fact.  Life is busy!  I finally completed my studies and graduated with my MSW.  I am actively looking for a job but still working part-time at the university, and enjoying a little bit of "free time" to do all the yard work I didn't have energy to do last year.  I'm running (sometimes) and yoga-ing (when I can) and soaking up the sun whenever possible.  Life has moved on, and so this blog has become kind of an after-thought - and that is GOOD!

And today - today is exciting!  Today is my Chemoversary - one year since my last chemo treatment.  A year ago today I introduced the Boob Fairy, all shiny pink tulle and satin.  I shocked the heck out of the infusion center staff, who admitted they'd never had anyone dress up to celebrate their final chemo treatment.

The original Boob Fairy

I can't understand why more people don't dress up and celebrate their final Dance with Toxins (especially when you can be all sparkly!)

Today, a year later, I am still recovering from the effects of those poisons.  And likely, I will live with pain and reduced heart function for...ever.  But the operative words here is "live with" - because that is what I'm doing (and doing well, I think!) - living.  Each and every day, as joyously and happily as possible.  I am still here, and intend to be for a very long time to come. 

So I am thankful for my short-lived affair with AC/T last year; because of them, I am still here today.  I am grateful for lessons learned, and for the opportunity to live (really LIVE!!) again.

Celebrate today!  Tell someone you love them; surprise someone with a hug.  Send an email or call someone and just say hi.  Think about someone you clash with and send them positive energy and love.  Do something kind for yourself; do something kind for a stranger.  Smile.  Make a funny face.  Make a child laugh.  Make yourself laugh.  Make love.  Make a choice to be happy - then BE happy!

I love you all - thank you for sharing this journey with me!

Rock On (or...my visit with the RO)

Another quarterly visit with yet another Cancer Professional.  This time is was the radiation oncologist (or, rather, everyone in the office but the actual doctor.  Now that I'm healthy I don't warrant a fully-professional visit).  Short version of the visit went something like this:

Me:  "How am I doing?"

Nurse:  "You've gained alot of weight.  Let's see what we can do about that.  Now put on this really ugly gown and wait for the PA."

Several toe-tapping minutes later...

Me:  "How am I doing?"

PA:  "Everything looks good.  But you've gained alot of weight.  Lose it.  See you in another nine months."

Aaaaannnddd...that was it.  Or something like that.  No tests or anything, although Lucy got a real good going-over (so did Ethel, but she's kinda over all the attention that Lucy has caused and so she wasn't particularly happy that morning).  Radiation has caused my skin and muscle and other tissue to shrink, so there is a great deal of associated of pain in my left shoulder and armpit - but no one seems terribly concerned about that.  Except me.  Cuz it hurts and limits my range of motion.  But on the flip side, no lumps, bumps or funny things to be concerned about, so it's another three months of dating NED for me!

I didn't expect much differently during this visit, because the RO doesn't order bloodwork or other scans (so there just isn't much for them to tell me).  But it's still good to see them, to have them see me, and to feel as though I'm not alone in this aftercare.

I've been emailing back and forth with my oncology NP, trying to gather more information about the genetics of my original cancer.  Knowledge is power, blah-blah-blah.  Reality is I want an assurance (or maybe that's a reassurance?) that I'm done with this beast.  Curse you, Cancer, for making me crazy (and fat.  Yes, you're the reason I'm fat.  Thank you).

After several back-and-forth emails, my favorite NP Dianne confirmed what Ken and I already knew, but didn't really want to hear - that my cancer is a molecular subtype known as Luminal B.

What does that mean?  Well, without trying to dissect lots of scholarly articles in this little tiny place (which no one really wants me to do), the easiest way to explain it is this:  It doesn't respond as well to chemo as, say, Luminal A might, and it tends to be aggressive.  In the end it explains why my Oncotype score was so high, and also why my PR status changed from positive (at pathology) to negative (thru Oncotype test). 

What does it mean in the long-term?  Who knows.  Might come back, might not.  Today, cancer is still my bitch.  Tomorrow, that might change.  But life is kinda like that, right?

Raising.......Arizona

One of the most profound movies of our time is Raising Arizona.  Not a week goes by that I don't find myself quoting the sage and philosophical words of H.I., Ed, Evelle, Gale, and the rest of the erudite crew. 

"There's what's right, and there's what's right, and never the twain shall meet."

"If a frog had wings, it wouldn't bump its ass a-hoppin'!"

"You know, I'm okay, you're okay, that's there what it is!"

"Son, you got a panty on your head."

But lately, I've been thinking about this insightful exchange, and how it perfectly illustrates what I'm feeling right now:

Gale (played beautifully and genuinely by John Goodman), as he busts into the rural bank:

"All right ya hayseeds, it's a stick-up!  Everybody freeze!  Everybody down on the ground!"

To which the old farmer replies:

"Well, which is it young feller?  You want I should freeze, or get down on the ground?  Mean to say, if'n I freeze, I can't rightly drop.  And if'n I drop, I'm-a gonna be in motion..."

Which is it gonna be?

I recognize that my inability to drop and be in motion has been my choice, my decision, perhaps even my desire.  Homeostasis is safe.  Venturing out into the world is scary.

I take my Tami and make my quarterly doctor visits and...for the most part I forget the last year.  Sometimes it still seems surreal.  Me - cancer?  Naw...must have been a really bad dream.  And for now it's easy to feel that way because reality creeps in only rarely (and only when I let it...or go looking for it).  Sometimes I'm almost sad to leave this all behind, and feel twinges of survivor's guilt when I look around and realize sisters have been lost along the way.  I want to move forward...but not really.

It's hard to explain because it often comes out as so much whining.  "Really, you're not over this yet?  Will you ever stop talking about it?  When do you become one of those cool cancer survivors who says, 'I'm cured!!!' and doesn't let it run her life anymore?"  You would think I'd want to run like hell from this experience and leave it behind like a bad relationship, when all I really want to do is gather it up and hold it close to me and protect it like a child.  Most days I'd rather freeze than be in motion.

Which isn't really an option, is it?  Because life moves forward whether I want it to or not.

The next few months are going to be busy and filled with lots of adventures - graduation, races, vacation, travel, family, a new job (I hope!) - so much motion!!  Spring is right around the corner (right...?) - a time of renewal and new life.  Last Spring I was in the midst of chemo and couldn't enjoy it; perhaps this year is my personal Spring, a chance for physical and spiritual renewal and an opportunity to adventure back out into the world.  Moving forward doesn't have to mean leaving behind; I think I need to get a good grasp on that concept.

Besides, even if I stand still, life will continue to go on around me.  Might as well drop and be in motion. 

Another Brick in the Wall

Yet another follow-up appointment with the oncology office today.  A good appointment, however, as we were able to get copies of the latest test results.  I now have proof in my hot little hands that my tumor markers are really low, and my bone scan shows no sign of metastatic disease or arthritis.  We decided to go back to the Tamoxifen, too.  I hate Tami, I really do, but I understand the necessity of hormone therapy and know I have to do this.

A very wonderful day indeed!

Except...I found myself crying uncontrollably.  Like last night at dinner - the tears just poured down my face.  And I can't stop, no matter how hard I try.  The sadness and exhaustion are overwhelming and undermining and I feel trapped at the bottom of a deep, dark well with no way to climb out.

I mention this to my NP who kindly points out that I look utterly exhausted.  She asks if I'm still running; I explain how intense this last semester has been, which has cut into any time for running / yoga / exercise (so no, I'm not running...except in circles, it seems).  We talk about everything that has happened in the last year, and she suggests that perhaps I've hit "the wall".  "You had so much to keep you occupied and focused when you were in treatment," she says, "As soon as you finish treatment you start the Semester from Hell.  And now you're done.  You need a chance to recover."

I recognize that I'm depressed.  Maybe not quite clinically depressed, or a Major Depressive Episode (hasn't been two months yet), but it's there.  Our NP even indicates that some of my pain could be attributed to the physical side effects of depression.  Who knows.  Who cares??  I just want a nap.

It's hard to be okay with feeling sad when I'm good and healthy and better!  It's difficult - nay, impossible - to give myself permission to relax and repair and recover.  I should be happy, right?  I should be jumping up and down with joy and smiling and running and loving and grateful to be alive!!!  So why do I feel as if my soul has deflated and my spirit has flown away? 

It's embarrassing to feel this way, to feel so weak and helpless, and so incredibly selfish.  I just want to find my happiness again.

Life goes on after cancer, but it's infinitely more complicated and exhausting.  Even in the light of positive outcomes, there can be struggle and sadness in the shadows.

The Gift of Joy

Today, I got the call I had been waiting for over a year.

A couple of months ago I stopped taking my Tamoxifen because of severe side effects.  My doctor gave me a month off, during which some of my pain abated.  But after a rousing "talking to" by Mr. Doctor (and some Oprah-esque A-Ha moments on my part) I chose to switch to another medication, Aromasin.  Similar to Tami but not typically as effective, it also comes with its own cadre of side effects including (most often) joint pain, bone loss, and those ever-pleasant "personal" SEs. 

Ugh.  Only took two months this time to realize Aromasin wasn't going to work for me.  Another visit to Mr. Doctor (who was much nicer this time...perhaps because Ken was with me and, well, it took us all of three seconds to realize Mr. Doctor was more interested in talking with Ken than he was with me...) and another trip to Club Med(ication vacation).

Mr. Doctor's concerns, however, were the continued bone, joint pain, and exhaustion.  Rheumatoid arthritis was his first option - "sometimes a result of the taxane chemos," he says.  NOW he tells me that.  "And we'll run tumor markers, just in case," along with a host of other bloodwork (the first and only time I  wished I still had my port).  "Of course, your Vitamin D deficiency could be causing the pain," he says.  News to my ears.  Didn't realize I had been dealing with a Vit D deficiency. 

Laurie, my Cancer Conceirge, calls me late last week.  "I see you're coming back to visit after Christmas," she says, and I tell her what's been going on.  That I had my bloodwork but am still waiting for the test results.  So, bless her heart, she does what she does best - pulls my records to give me the results (why can't the doctor ever do this?) 

Tumor markers are within normal limits.

RA factors are within normal limits.

Vitamin D is slightly lowered, but I'm on top of that.

The rest of my bloodwork looked perfect.

So - I am assured that means I don't have RA.  And while tumor marker tests aren't always perfect, we can assume I don't have a new primary tumor.

Because Laurie is wonderful, she promises to call me the day after my bone scan to give me the results; she doesn't want to me "wait and worry" over Christmas (she is truly a blessing!)

The bone scan was yesterday.  Same as the bone scan I had last year:  injection of nuclear dye, wait 3 hours for it to course through my body and attach to any cancerous areas in my bones so I light up like a Christmas tree under a scanner.  The scan was easy-peasy (I even get to keep my clothes on), and was over before I knew it.

But this time, the tech wouldn't let me see the scan.  When I asked if he saw anything concerning he simply said, "The doctor will be in touch with you in 3 to 5 business days."  And he escorted me to the door.

And so I panicked.  Because the last time I felt that feeling of, "I know something but I can't really tell you, but by not really telling you I am really telling you, but you have to guess, and I can't confirm, but you know what I'm trying to say, right?" was after my biopsy.  And we all know what happened after that...

Laurie called this morning, as I wended my way on 94 during rush hour to my internship. 

My bone scan is clean.  No sign of arthritis, and no sign of bone metastases.

I am now, truly, completely, formally, dating NED.  There is no evidence of disease anywhere.  No guessing or hoping there's no primary tumor hiding somewhere, no worrying that there's a met spot on my spine or hip or shoulder.  Nothing. 

So while I celebrated (totally the wrong word, but what else do you call it?) my Cancerversary just weeks ago, I can now happily celebrate (and that's totally the right word here!) my continued relationship with NED. 

I couldn't have asked for a better Chrismukah gift.  Cancer is still stupid, but life is so very, very good.

That horrible moment when you realize your life will never be the same...

Apparently, I'm in denial.

Personally I like denial, because it's a pleasant and happy place to be.  Life is nice here, like floating on the lake on a warm summer's day, leaning back to feel the hot sun on your face, dipping your fingertips in the cool water.

And then the heaven's open up with a crack of thunder and you're whirling around in a waterspout, hanging on for dear life.

Dammit.

I met with my medical oncologist today - not our usual nurse practitioner, and not the doctor we've seen in the past.  This is a new doctor, and I'm not certain why I saw him instead of my usual doctor, but I think it has to do with the fact that he's the devil.  Or, it's because he's very good at explaining statistics, and for that he's also the devil.

Which explains the waterspout of crap I heard in the office today.

He is glad to know that I'm feeling so much better since dropping Tami, "but let's talk about what that really means."  Several points emerged during our (one-sided - HIS) conversation:

• Because of the chemo, my bloodwork shows that I am currently post-menopausal, which means my body is producing less estrogen than when I was pre- or peri-menopausal.  "But your fat is still storing estrogen," he said.  What I heard was, "Lose weight, lady!"  Yeah, yeah...I'm working on it.
• My cancer is aggressive.  He says that the small size of my tumor and my node-negative status are still in my favor, "but that Oncotype score (42) is really troubling.  That test is very indicative of how your cancer behaves, and yours is aggressive."  I'm such an overachiever.
• "Recurrence means metastatic disease, which is incurable," he says.  "It's very rare to have another primary tumor, although it can happen."  Yeah, it can, cuz I know people it's happened to.  Thanks.
• Without the full benefit of chemo AND Tami, my recurrence rate changes from 28% (without any treatment) to about 23%.  Unless I take the Tami OR another hormone therapy, my recurrence rate will not reach the 18% quoted on the Oncotype test.  
• If I was triple negative (meaning ER-, PR- and HER2-), "we'd do chemo and radiation and send you on your way."  No hormone treatment because it doesn't work when there are no hormone receptors in the cancer.

Since he kept bringing up the Oncotype test I mention that the test shows I'm actually PR- and barely ER+ (6.5 is the cutoff, and I'm 6.6), so really I'm almost triple negative, and really, how much benefit am I getting from taking any hormonal therapy?  He checks the report (because I don't know what I'm talking about?) and then checks the original pathology report.  "I'm less than 10% PR+, and 50% ER positive," I say.  I know this report like the back of my hand; I can see it clear as day when I close my eyes.  "Yes, well, you're right," he says.  And then explains that the pathology describes the cancer make-up, and the Oncotype describes the cancer gene expression.  So they're two tests really testing for two different things.  I guess.

He spends the next several minutes quoting studies and statistics, down to the single percentage point of the benefits of each of the treatments.  He explains why it's important for me to do at least two, if not 10 years of hormonal therapy.   He talks about this as though it's a given, as though I don't understand the inherent risk of not doing it.  And I'm mad not because he's wrong - but because he's right.

He explains that I can forgo Tami but really should try one of the aromatase inhibitors (Arimidex, Femara or Aromasin), which is given to post-menopausal cancer survivors (and sometimes to those with metastatic cancer).  Of course unlike Tami - which is a bone-strengthener - the AI's will actually deplete my bones further.  "So, for someone like yourself who is osteopenic, we would also put you on Fosomax or another bisphosphonate."

So I could take an AI AND a bisphosphonate.  But wait...it gets better.

When I was first diagnosed with osteopenia our NP Dianne mentioned bisphosphonates are great at building bones, but come with a host of really nasty side effects, including jaw necrosis in a significant percentage of patients who use it.  It also often causes severe joint pain.

As do the AI's.  "But not as bad as Tamoxifen," says the doctor.  "But given your history of side effects, you may have trouble with the AI's, too." 

The additional benefit of AI's or Tami is the reduced recurrence for contralateral breast cancer (Ethel, not Lucy this time).  For every year after my original diagnosis, my risk of contralateral BC rises 0.5%.  "If you were 75 it might be different, but you've got 30 good years - that's a 15% increase - to think about."

"So," he says, "you have two choices.  One is to keep believing what you believe and hope your cancer doesn't come back, or try an AI and see if you can tolerate it."

I just sit there and stare at him, but I don't think he was really paying attention.  He writes me a prescription for Aromasin, and asks me to come back in three months.  "Of course, if it's too hard you can always stop.  But I'd really think about all we've talked about today.  So call us if you decide to stop."  He walks me to the front desk, and before I can say goodbye or thank you, he turns and walks away.

I'm not sure how I feel about all of this yet.  Ken wasn't able to come with me today because he was out of town, so we need to talk about our options.  But I can't help but feel that regardless of my choice, this whole stupid cancer thing isn't going to go away quietly or gently.  I never wanted a 100% guarantee that the cancer wouldn't return - I know I'm never going to have that, no one does - but I wanted to believe that I had done all the hard work already (slash, poison and burn) and that hormonal therapy was an "added bonus" of benefit.  Instead, what I heard this morning is it's just as important as everything else in keeping metastatic disease at bay.  And so my denial comes full circle, as I realize that I want to make an informed decision, and I just got more information than I necessarily wanted to hear.

I'm taking my M&M's, my fat ass, and my raft and going back out to the Sea of Denial...at least until Ken comes home later.

Thoughts, anyone?