Happiness is...

10.  Being able to actually feel and see my new baby eyelashes!

9.  Knowing that the reason the last of my eyebrows fell out is because they're quickly being replaced with new ones!!

8.  Having almost half an inch of shocking white "chemo hair" - interspersed with lots and lots of newly-sprouting thick, dark hairs!

7.  Making it through 12 of 30 radiation treatments with no visible signs or changes to my left breast or scars - so far.

6.  Having a complete and total return of my senses of taste and smell - and realizing that I never appreciated the beauty of either before.

5.  Knowing I will never again take my sense of taste or smell for granted.

4.  Having Portia removed - even if it means now fighting a nasty infection as a result of an allergic reaction to the surgical patch and tape.  -->insert sad and itchy face here<--

3.  Did I mention having Portia removed?

2.  Having energy enough to get back to "normal" - whatever that is - including running without fainting, and yoga-ing without pulling a muscle.

1.  Waking up, every morning, and taking that first deep breath, knowing that today is another day of blessings and happiness.

"Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for."  - Epicurus

What a difference a day makes

Monday was my 5th of 30 rads, so I was 1/6th of the way done!

Yesterday was my 6th of 30 rads, so I had completed 1/5th of my course!

Today will be my 7th of 30 rads.  At 8:00 pm tonight - half-way between today and tomorrow's treatment - I will be 1/4 through my entire radiation treatment!!

This is why I love numbers so much.

Oh, and I got it wrong - this is actually what my radiation machine looks like (it's really dark in the room, and frankly I wasn't paying much attention to the machine because the whole thing is just so...surreal...)  It's much less intimidating in this picture, in the light of day...

Totally rad, dude!

This week began our new path on this journey - radiation treatments.

All treatments have side effects and potential long-term negative outcomes, and radiation is no exception.  I really debated going forward with this.  I wanted to be certain it was the right and best choice for me, for my long-term survival, for a lowered risk of local recurrence, so I spent hours upon hours doing research and educating myself.  I had to weigh the benefits vs. the short- and long-term potential risks.  And I'll be honest - in the end, it made sense to do radiation, but I am still hesitant about and unhappy with this choice.  It pisses me off to no end that after all these years, after all this money and research, this is still the best choice we've got - but it is what it is.  I've already been slashed (surgery), poisoned (chemo) and now burned (radiation).  It's the trifecta of BC.

Tuesday was my first radiation treatment.  Every day begins the same:  I walk into the radiation center and go directly to a private waiting room with a changing area.  I grab a hospital gown and a robe, and undress from the waist up (my first lesson on my first day - don't wear a dress!)  My tech, Dwayne, comes to get me when he's ready.  Around the corner is an innocuous, dark doorway.  As you step through the doorway you realize there are no lights, the walls "feel" heavy around you, and you've stepped into a maze:  10 steps forward, turn a corner, 10 steps to the right, turn a corner, a couple of steps to your left, and your suddenly in the radiation room.

A fairly accurate picture of my radiation machine

In my case the table is already "set up" for me - there's a pad about half-way down against which my butt rests.  That forces my head into a cradle in a certain position.  At the top end of the table, above my head, is a large "T" bar that I hold with both hands.  Little red laser beams on the machine help Dwayne line up my tattoos, and then I get my "active breathing coordinator."

No, this is not me.  But that's what my ABC looks like.

The neat thing about the ABC is that it holds my breath at a certain point, creating a space between my heart and lungs, and the tumor site.  This lessens the damage (but no, does not eliminate it) being done to my heart and lungs during radiation.  This is a great cross-sectional explanation of exactly how they're able to radiate my breast without zapping all of me:

A & B are the radiation beams; C (yellow area) is where the radiation
is hitting my breast; D = rib cage, E = heart, F = lungs, G = spine, H = sternum

It's pretty amazing to me that they can target such a specific area, but they work very hard at getting the beams aimed just so. 

I get two "zaps" every day.  I take a deep breath, release a little, and the ABC "holds" my breath at a specific point (92%, apparently).  During the first zap the head of the machine is just above my right arm, aimed across my chest at the right side of my left breast (similar to "A" above).  I count to 7, the zap ends, and my breath releases.  I can breathe normally for a few seconds while the machine rotates around me to the other side, and aims at the outside of my left breast (similar to "B" above).  I take another deep breath, hold it, and this time I count to 12.  Less than 2 minutes from start to finish.

That's it.  I get dressed, I leave - and it's about 15 minutes after I first arrive.

This week I've had four treatments - only 26 more to go.  So far my breast and skin look normal, but I am already noticing a little tightening of the scar tissue from the lumpectomy and the node biopsy.  Another BC sister said her radiation oncologist (RO) likened the process to "bacon in a microwave" - so you can only imagine what my poor boob might look like by the end of this.

In actuality I don't know what will happen over the next six weeks.  Some women seem to have really bad experiences, others not-so-bad.  I'm giving up my underwire bras this weekend and switching to soft cami's and cotton things to lessen the pressure and irritation.  Thank goodness for summer and halter tops! 

And thank goodness for the weekend and days off.  My little boobie needs a break.

The gift that keeps on giving

Yesterday, Ken and I went back to the oncologist's office at the bi-weekly chemo appointment time - 8:30 am.  But for the first time in 20 weeks it was for a follow-up visit, not a treatment, and it actually felt very different.  They still weighed me (damn them!) and poked my finger, and then we got down to brass tacks planning the next five years of my life.

I start Tamoxifen now, and will take it for five years.  It's classified less-than-scientifically as an ESD - that is, an Estrogen Sucking Drug.  As that label implies Tami suppress my estrogen in an effort to reduce "feeding" my estrogen-receptive cancer with, well, estrogen.  Technically Tami is considered "treatment," but I don't see it the same as the chemo and radiation I have done, although there are considerable side effects with this drug, too, including cervical and uterine cancer, and ovarian cysts.  So much fun...

I learned yesterday, too, that I now have osteopenia - a decrease in my bone density.  I did not have osteopenia prior to starting chemo.   It is caused by - drum roll, please - a loss of estrogen.  Interestingly enough, runners are also often affected by osteopenia.  It doesn't appear that I can reverse this - but I can work towards preventing it from going to the next step - osteoporosis. 

I asked my wonderful nurse-practitioner about follow-up testing like PET scans and tumor marker blood tests, and she said matter-of-frankly, "There aren't any tests that will predict if your cancer will come back.  Tumor marker tests are only one piece of the pie."  In the end, the reality is that if I notice something "different" or I feel significant pain for longer than a couple of days, I contact their office and we go from there.  There's no way to know if the cancer will come back - until it actually has.  And this is okay, really.  Because I can spend my time worrying about a recurrence, but that doesn't change anything.  In the end, it is what it is - and I don't want to waste my time worrying about something I cannot control.

My clinical trial coordinator shared with me two wonderful gifts before we parted:  a delicate crystal bracelet with a pink ribbon charm, and a book about Life After Treatment.  There is a chapter that provides numerous statistics indicating that recurrence - both local and metastatic - tend to occur in the early years (typically three) after the end of treatment.  However, recurrences can happen 20+ years later.  In this way, breast cancer is different than most other cancers, whereby at a certain point survivors are considered "cured."  This is yet another reason why we hear the rallying cry for "The Cure" so frequently - we are rarely ever "cured" but rather "dancing with NED" (No Evidence of Disease).  As the author points out:

"This is why, when it comes to breast cancer, there are no absolute guarantees of cure after treatment.  It simply isn't possible to reduce risk of recurrence to zero - to say positively that you are cured as of this moment and there is no change you will ever have to worry about breast cancer again.  There is no magical five-year or ten-year point in time when breast cancer can be described as cured.  For women who are living with NED there is only a steadily declining risk."

So I hope to be dancing my own Happy Dance with Ned here pretty soon.  In the meantime, BC continues to be the gift that keeps on giving.  Life will never be what it was - but it will be - it is - very, very good.  I'm so grateful for each and every day.

Mean Girl

My final chemo was 10 days ago; radiation doesn't start until next week.  For the first time in several months I have a little "time off" - a vacation, if you will - from poison and pokes and side effects.  I should be relishing this time, right?  I should be relaxing and enjoying and laughing and smiling and happy-happy-happy...

Instead, I've become a Mean Girl.

It's true.  I can own this, even if I'm not particularly proud of it.  I am Mean.  I'm really cranky.  I'm a truly unpleasant person to be around right now.  Hell, even *I* don't want to be around me.

A poor soul from the hospital called me last week to inform me (rather unceremoniously) that they don't participate in the chemo co-pay program they had me sign up for months ago.  I was confused; "You gave me the paperwork to sign, how do you not participate in the program?" I asked.  Turns out the oncology center and the hospital don't work in unison; they're separate entities and so one may do something that doesn't affect the other.  The oncology center gave me the paperwork, assuming the hospital participated, and it doesn't.  Which means nothing for them, but everything for me.  And so I got snotty with this poor soul, who did her level best to get off the phone as quickly as possible without long-term psychological damage.  I still feel bad for her.

Five minutes later the phone rings again, and this time it's the radiation department, calling to set up my first appointment.  My heart was still pounding and my adrenaline pumping from the previous call, and so I lit into her, too - unfortunate timing.  People assume I have nothing better to do with my time than attend appointments in the middle of the freaking day - don't they realize I work and go to school 60 miles away?  Right, go to work early and come home, then drive back for class?  Sure, lady, I've got an overabundance of time, energy, and gas to do this with.  Seriously?!?! 

Turns out they only schedule first rads visits at 1:00 in the afternoon.  But my remaining visits should be available at 8:00 am, making my drive to Ypsi fairly uninterrupted.

Oh.  Sorry.

This isn't her fault.  It's neither their fault.  They didn't need to get yelled at by a bald, round-faced, hairless creature.  They don't care that I'm still crawling out of bed some days; that the SEs haven't miraculously left my body; that money doesn't grow on trees or fly out of my butt around here. 

I simply shot the messenger.

All of these months I have been happy, truly happy.  Feeling blessed for family and friends, for support and guidance, for love and kindness, for insurance and generosity.  I have been feeling good, even when I was feeling bad, and knowing that an end was in sight, this wouldn't last forever, I would survive to live another day, to run again, to attend yoga class again, to graduate again, to have a real job again.  There was so much peace that I thought I had come to terms with all that was happening, and I was so proud of myself for being positive and enlightened and joyous.

While I was actively in chemo I think I could see a goal in sight, and that gave me something to work towards.  Now that chemo is over, several people have intimated that they believe "treatment" is done - I think I believe that, too, on some level.  Right now it's hard to see radiation as "treatment" because (1) I haven't started it and (2) I don't know how it will leave me feeling and (3) it won't have the poisonous SEs that chemo has had, so will I feel like it's making a difference?  I feel a little in limbo, in this space in-between the two courses of treatment, and it is here that I am finding my anger.

Either I was in denial or I just didn't recognize the magnitude of the negative feelings that can be had during a time like this.  I prefer to think it was the latter, as I was (and still am) very open to feeling whatever comes along, no matter how bad it might be.  Never having been through anything like this before, it's hard to know exactly how one is supposed to feel - good, bad, or otherwise.  So maybe I just didn't know that I would have moments of being angry, or furious, or nasty, or just plain mean. 

I will start to feel better soon, I'm certain.  The SEs of chemo are slowly leaving my body, but not as quickly as I had hoped (and perhaps expected).  I've been feeling sorry for myself, and that has translated into overt anger and nastiness.  God bless the person who crossed my path and pissed me off because they didn't deserve whatever they got from me.

In the end, it's okay to be angry about all of this.  It really sucks, on so many levels.  It interrupts a busy life; it adds stress to an already-stressful time; it interferes with the best laid plans; it creates chaos that feels impossible to reign in.  Cancer is the gift that keeps on giving (it gives me a headache, a backache, a pain in the ass, numb fingers and toes, disintegrating finger nails. and a reason to buy fake eyelashes, if nothing else).

In the meantime, I'll stuff away my inner Lindsay Lohan, and work more towards finding that inner peace.  Because no one likes a Mean Girl - even me.

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!