The Tattoo'd Lady

In celebration of the end of my chemo, I went out and got tattoo'd yesterday:

Yeah, that's it - one of my three radiation tattoos.  This one can be found in the middle of my sternum, directly between my breasts.  The other two are just as delicate, intricate and attractive, and are on each side of my chest, below my ribs and armpits.  This triangle allows the radiation tech to "line 'em up" in the exact same location each and every radiation treatment.

Maybe when I'm done, I'll "connect the dots" and create something festive and celebratory across my chest.  Like a battleship.  Only prettier.  And bigger.

Radiation will begin after June 9th, and last for 30 treatments - once a day, five days a week for six weeks.  The first 4.5 weeks will be radiation of the entire breast; the last 1.5 weeks will be a "boost" - a very small radiation area pointed directly at the tumor site.  Short-term side effects are minimal - I'll likely be tired (much like chemo, the effects of radiation will be cumulative over the 6-week period) and will be sporting a bitchin' sunburn - but just on my left breast (I'm going to make up a story that involves tequila, a pool boy, a hot sunny day, and falling asleep with only half my tank top on...)  Long-term effects can include heart and lung damage and lymphedema (swelling of the arm/hand on the affected side).

In an effort to curb the potential heart/lung damage, I will be using a scuba breathing apparatus, of sorts, during each of the treatments.  It's a really interesting thing, and the tech and I spent well over an hour refining the way it would work.  In short - I take a deep breath and, using the mouthpiece, am forced to hold the breath at a very specific point in the exhalation, for 25 seconds.  Filling my lungs with air creates a space between my heart/lungs and the tumor site; holding my breath at that very specific point creates optimal space, decreasing the likelihood that radiation will cause damage (or, if it does hit my heart/lungs, will hit the smallest area possible).

While I was feeling very free and liberated after last week's final chemo, it hit me yesterday that treatment isn't yet over.  I have been told that radiation will be much easier in every way than chemo, and for now I trust that prediction.  I don't mean to sound impatient, but I just really, r-e-a-l-l-y want this all to be done.  So yesterday felt a little like a slap in the face to someone who thought she had gotten away from it all...only to be reminded that it ain't done yet.

It's all good - just another step in the journey, a new path in the road.  And besides - I got free tattoos out of the deal.

Stepping off the old path, on to the new

The last couple of weeks have been a whirlwind of excitement, adventure, love, hope, courage and joy.  Blessings have fluttered around and landed in my heart a thousand times, as I am reminded again how lucky I am to be surrounded by the most incredible family and friends.

A week ago Ken and I were honored to attend a benefit concert on our behalf, organized by the members of my son Michael's band (Cyk Cylinder) and their amazing families.  The venue space was donated by the owner, and several other local bands participated, too.  I have struggled with describing this event because, frankly, I am still at a loss for words.  People spent so much of their time, energy and passion to gather donations, make an afghan, bake cupcakes, organize the raffle, pull bands together, get the word out to the community - for someone they don't really know.  They used their considerable gifts and talents as a vehicle to help another human being, and being the recipient of that generosity and kindness has been life-changing.  I am so honored and humbled, and will work hard to "pay it forward" in some small way, each and every day.  

The next day, on Sunday, we gathered with another group of wonderfully loving, supportive and generous family and friends as we walked and ran the Komen 5k in Kalamazoo.  Ken's daughter Miriam and her husband Aaron drove in from Madison; Ruth and Sean flew in from NYC.  Mary and Stephanie cut their Traverse City vacation short and drove down to support us.  Ken brought several coworkers and their friends and spouses.  Our dear running friends Lorelei and Kelsey organized "Team Nancy" (thank goodness someone else did, because I can't organize my sock drawer these days!), and we rocked the race!  It was late - 2:00 - on a day where the temperature (before moving or breathing) was 90+ - in other words, not the optimal day for a race.  And yet, we did it - and did it well!  I had not run in three months, and even walking has been a challenge, but we all crossed the finish line in style! 

Some of our team members, from left:  Aaron, Miriam, me, Ken, Ruth,
Clint, Rodney and Laura.  Sean is hiding behind the camera.

Even though life is really all about the journey, everything had been leading up to the end...the destination.  Our celebrations carried us into the week we'd anxiously been awaiting for 4.5 months - my final chemo.

On Thursday Ken and I headed to the infusion center for my last treatment.  We carried pink flowers and boxes of chocolates to share with the staff - the friends - who have supported us through these days I hate so much, held our hands and wiped our tears, and have always been more compassionate and caring and patient than I could have ever hoped for.  These women and men have made a very scary and difficult time that much easier to get through, and there was no true way to share with them the depth of our gratitude and how much they have changed our lives.

Except, maybe, the Boob Fairy.

Yes - the Boob Fairy, all pinked up in tulle!

Yes, I did.  I went to my final chemo in full Boob Fairy regalia - all pink tulle and shiny sweaters and glitter shoes!  Someone commented that they'd never seen anyone dress up for a chemo appointment - but they seemed to appreciate my need to celebrate the ending of this part of my journey.  People came from other areas of the office "just to see," and we all had a good laugh.  As usual I slept through most of my treatment, but I still felt like I was doing the Happy Dance inside.

Eventually it was over, and so we gathered our things and left.

And I cried on the way home, but it was okay.  I am grateful and so very happy that chemo has ended, but it has defined my life for so many months that I feel a little lost right now.  Part of this journey is learning to navigate the New Life we are living - the appointments, the schedules, the testing, the treatment, the changes in every aspect of What Was.  What Will Be is different, but still good, and we look forward to moving forward and taking that next step.

Doing it in style and grace - and lots of shiny pink tulle, to be certain!

Chemo Brain

Let me tell you about chemo brain.

Wait...I forgot to put toilet paper on the grocery list, hang on, be right back...oops, sorry, I got distracted...crap, I forgot to print off my paper for class...I should really get ready for class, yesterday we spent the class time in the courtroom in Ann Arbor, I ran into a former colleague and friend who was there on a case, what a small world!  Then we went to lunch at Zingerman's.  I mean, I didn't go with my friend but with other students from the class.  I mean, they're friends, too, but it wasn't the friend I met in the courtroom. But anyway, it reminded me of high school, because we'd go to Kerrytown or Zingerman's for lunch every day.   That was back when Gabriel Richard was downtown, they built a new highs school a few years ago out at Domino's Farms.  I forgot to ask my friend how her new job was going...  We had Domino's pizza for a school event a couple of weeks ago, I haven't had that in years...wait, let me check my calendar, yeah, see, I forgot to write down that I have to work on June 30th, which bums me out because there's a BC women's retreat in Manchester that weekend that I wanted to attend...

This is my brain on chemo.  Any questions?

I have always been easily distracted by shiny objects (staff meetings in my former office were a jumble of off-topic conversations that often created frustration among some coworkers), but this is different.  I've heard the term "chemo brain" bandied about, and during my first treatment we became intimately acquainted.  Chemo brain changed significantly (or has simply increased in severity) with the Taxol, and continues to this day.  My brain has ceased to function on several levels.  Serious, true cognitive impairments have set in, to the point where having conversations and accomplishing simple tasks around the house become nearly impossible.  It's a hard SE to explain to others, because it doesn't make any sense, and some days are worse than others.  Now, nearing the end of my treatment, I can predict which days will be worse (Tues - Sun after treatment, I should never attempt a conversation with another human being, but the cat is okay) and which days will be better (Mon-Wed before treatment I can write a paper for school, but need to explain in advance that some of my sentences will be wildly incoherent).

The first couple of days after treatment my brain is wild and out of control because of the steroids.  Once those wear off and the *crash* occurs, I wake in a fog of half-thoughts and partial memories.  In some small way, I can only imagine this is what dementia must feel like - I know I know something but I can't remember it, and I was just thinking about it but then it literally flew out of my ear...

I have conversations with my husband that disintegrate mid-sentence.  I forget what I was saying.  Or I simply lose interest in the conversation.  It's odd.  Yesterday, a classmate was telling me an important story and I saw an old friend walk by - and so I got up and walked over to her, completely (and unintentionally) dismissing my classmate.  I am so easily distracted that I cannot help but change the topic of conversation several times in one minute.  I talk over other people.  I physically cannot hear what they're saying - it's a jumble of words that make no sense.  Recently, Ken said something to me - a complete but simple sentence - and I looked at him with a blank stare, then started to cry.  Not one word he had spoken reached my brain - I couldn't understand a word he had just said.  He repeated his thought, and then it clicked in my brain - but that has happened several times, and it's really quite frightening.

Work becomes so difficult, and I apologize profusely to my supervisors and coworkers.  Sometimes, I simply don't know what I'm doing - tasks I had been easily able to complete in the past.  Much of what I do is brain-related - you know, write a letter, make a phone call, attend a meeting, discuss a concept - and I am failing at those tasks, miserably.

I have an interview for my internship on Tuesday morning, and am terrified I won't be able to speak intelligently.

I hope and pray this resolves itself quickly after my final treatment.  If this is the way...oh my gosh, it's a beautiful day and I really don't want to be stuck in the classroom all day, I brought popcorn because we're going to be watching a movie about death row inmates sentenced as juveniles...  If this is the way it's going to be from now on, I'm in trouble.

Until then, I apologize in advance to every single person I know, love, interact with, or who has the unfortunate opportunity to meet me for the first time during this awful period of brain (in)activity.  I am not like this, and will work harder to be more involved with myself and aware of what I'm doing, but I can't promise anything...especially since I need to try and remember to get my flowers planted this afternoon before they die, I already lost my Mexican heather and, shit, gotta remember to pick up some soil on the way home, and another mint plant...ooooh, mint juleps sound nice, maybe I'll make some for later this evening...

I Am a Survivor

A few weeks ago a student stopped by my desk at EMU to ask for directions to another department.  After a brief chat she said, "Are you a survivor?"

I blinked...then blinked again.  I must have looked like a deer in the headlights.  She got a little flustered, as though she had asked the wrong question of the wrong person and then I realized what she was asking me - Am I a cancer survivor?

No one had asked me that before.  No one had used that word in conjunction with me.  In all this talk of diagnosis and treatment and prognosis and recurrence, no one had once said I would survive.

"I'm working on it!" I replied, suddenly understanding.  She said she was a five-year breast cancer survivor, our sisterhood established.  We chatted about treatment and outcomes, new testing and clinical trials, and we wished each other health and wellness as she left for her destination.

I had forgotten about that conversation until today.  I had forgotten about survival until this afternoon.

Ken ran the ACS Bark for Life 5k today, thanks to our friend Bobbi Jo who wanted to support me and others she knows battling cancer.  I had to work this morning so, unfortunately, I missed all the running fun (but will have my chance in two weeks at the Komen run in Kalamazoo).  Ken tells me he's got "swag" to share - and a special gift for me.

It's an ACS shirt - and on the back it says,

SURVIVOR

I burst into tears.

Every day I work towards completing treatment and getting back to my normal life - whatever that "normal" may be.  But in my darkest hours, I fear I will not make it through this, that this cancer will kill me - now or later.  I am apprehensive about the testing I will complete once treatment is over - the baseline they'll use for future tests to determine recurrence or metastases.  I wake up crying, fear and despair pouring over me from nightmares I cannot control.  I have micro-moments of panic, like walking into a brick wall, that all this work will be for naught and I will not be prepared for what may come.

The tears flow for several minutes as I let that word wash over me, cleanse me with its power and force and make its way into my heart and soul.  In all these months I cannot remember a moment where I felt the enormity of my survival.  I cannot remember ever feeling that I would be a survivor.

I am ready to own that word:  survivor.  That's me.

Yes.  I am a survivor.

Hair, hair, hair, hair...hair

"Gimme a head with hair, long beautiful hair
Shining, gleaming, streaming, flaxen, waxen

Give me down to there hair, shoulder length or longer
Here baby, there momma, everywhere daddy daddy"

In all these months, I've never had a moment of missing my hair.  I save 45 minutes in the morning - which translates directly into 45 minutes extra sleep, or 45 minutes extra chatting with Ken, having coffee or watching the news - by not having any hair.  I throw on a color-complementary scarf or wrap or hat and walk out the door.  Sometimes, I go nekkid and topless - so easy-peasy that I have conspired to shave my head long after my hair wants to grow back.

No shampoo, no conditioner, no hot oil treatments, no leave-in conditioners, no blow-drying, no curling, no flat ironing, no hot rollers, no brushing, no combing, no ponytails, no headbands, no clumps of hair in the bathroom drain.  The most I do is swipe a lint roller over my head to pick up any stray stubble falling out.

"Flow it, show it, long as God can grow
 My hair

Let it fly in the breeze and get caught in the trees
Give a home to the fleas in my hair
A home for fleas, a hive for buzzing bees
A nest for birds, there ain't no words
For the beauty, the splendor, the wonder of
My hair"

In all these months, I never noticed other people's hair.  Last week while waiting in line at the grocery story I found myself staring rather intently (and probably inappropriately) at the woman two lanes over - at her hair.  A beautiful brownish-reddish color, an adorable bob haircut shorter in the back than in the front, sideswept bangs, so smooth and straight and full and beautiful.

For the first time that I can remember - I missed my hair.

"I want it long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty
Oily, greasy, fleecy, shining, gleaming, streaming, flaxen, waxen
Knotted, polka-dotted, twisted, beaded, braided
Powdered, flowered, and confettied
Bangled, tangled, spangled, and spaghettied"

Now I find myself not only noticing, but taking note of, other people's hair.  I think, "I've always wanted to try that style," or "Maybe I should consider buying a flat iron" or "A new hair dryer - I deserve a new hair dryer!"  I comment to friends about their beautiful hair:  "That style looks so great on you!" or "I love your new color," or "Your stylist is fantastic!"  I argue with and scold the lint roller as it at is pulls little strands of dead hair out of my follicles, as though those hairs will ever amount to anything (they're dead, they cannot grow, but they're still hair).

My friend asked me today why I don't wear either of the two wigs I have (one generously donated by the ACS, the other a very inexpensive wig I purchased before I started treatment).  Horrified, I turned to her and said, "Oh my god, because they look like wigs!!!"  Which is true - both of them look fake, they make me look like I'm wearing a wig, and while I get a good laugh out of them (and my grand-daughter enjoys playing dress-up with them), I find myself actually quite sad when I pull them on my bald head.  They aren't horrible wigs; I will share them with someone else who can use them and will appreciate them.  But I thought I was okay without hair and didn't need it, or the wigs, and so they still sit in their boxes in my closet.

While some of my BC sisters are experiencing hair regrowth during this part of chemo (Taxol), it seems to be those receiving the drug every week.  I don't know if it's because my dose is "dense" (twice the amount every two weeks) or because my body is not ready, but my hair is not yet returning.  In fact, my hair continues to shed:  I have exactly one eyelash left, on my right eye, and every day I lose three or four eyebrows, to a point where they're almost gone.  I have a little bit of "duck fuzz" on the back of my head - tiny white hairs trying to grow back in, but I noticed dozens of them on the lint roller after last week's treatment.  I may just have to wait until after my final treatment before I hold out hope for the return of my hair.

But my hair will return.  And I will be so glad when it's back.  I'll happily give up that extra 45 minutes in the morning to be able to style it, to grow it, to cut it, to clean it out of the drain, to feel Ken's fingers running through it.

I'll even be glad to shave my legs again.