Midpoint Musings

July 12 - The great reveal

I have had it with this heat wave.  I suppose you can take the girl out of 200-inches-of-snow-a-year-Oswego-New-York but apparently Oswego New York doesn't leave the girl.  I love hospital ORs that keep their thermostats the temperature of meat lockers.  I love going to the freezer section in Shop Rite and opening the door with no intention of buying anything and just standing there to cool off, or course looking like I'm seriously pondering buying the organic frozen berries versus the cheaper alternative.  This is due to the chemo continuing to hammer away at what few hormones are left.  I guess this is what hotflashes are all about.  I am a little sorry I know this too well, although I am mindful that both the hotflashes and the weather are all temporary.  The lesson?  Synthetic hair, while it will never curl in humidity, is the hottest stupid thing to wear on your head in the middle of oppressive heat while undergoing chemo that brings on hotflashes.  The scary thing, the wig is about 1/8 the amount of hair I used to have on my head.  Sure, my wig doesn't frizz in the high humidity, and it really does look great with minimal effort but is it really sexier to have perfectly straight shiny hair and the head sweat with no where else to go than right down my face and neck taking every hint of makeup with it?.....lovely.

So in the middle of the early evening on this oppressively hot July afternoon, heat index in the triple digits, I had enough.  I decided to extinguish a double three year-old massive fatigued-induced meltdown that had worn away my last few nerves in the middle of my kitchen by simply and calmly looking at both my girls quite sternly and removing my scarf revealing nothing but milky white scalp underneath.  With no warning.  Just like that.  A great way to silence nonsensical whining very quickly.  Understanding this tactic will only work once.  I had gone over a month concealing my baldness in front of them, but enough was enough.  I removed my scarf and waited for what seemed an eternity for a reaction from them.  It was so deafeningly silent in the house I could almost hear the drips of sweat falling from the tip of my nose and hitting the floor.  They both stopped, stunned, and just stared at me.  A luxurious ten seconds of silence....what the heck did these girls think happened to my hair all this time?

The quiet was snapped by Ella's trademark hearty goofball cackle.  Just like her father's.  Directed right at me.  Gianna started to giggle too.  What a relief.  I can hold off a bit longer from starting that savings account for their future therapy sessions that someday I will probably try to blame myself for them needing.  I bent down, lifted up their shirts and proceeded to tickle their bare bellies with my perfectly proportioned blonde peach fuzz sphere.  "Hey! I'm still Mommy!  My peachy head was so hot it had to come out and say hi!"

"Mommy, your head is naked!!" Ella screeched with glee.
"Well Ella, aren't we all naked under our clothes and hair?"  Immediately receiving back that wheels-are-turning, deer-in-headlights glare back from my daughter.  Oops, I forgot.  Barely three years old.
"Mommy, your hair broke."  Gianna stated a bit more flatly, a bit more pensive.
"Well, yes it did honey.  But it's coming back soon."
"Yeah, it's going to be GREEN!" Ella screamed with delight.
"Well that would be fun!" - thinking for a minute that I may not mind hair of any color, provided the weather would cool down first.
"Mommy, where is your hair?"  Ella asked.
"Ella, it's in the other room!"  Gianna, remembering the conversation we had a few weeks back.

And with that, the two of them dashed down the hall to my bedroom to make sure my hair was on its stand on my dresser.  Putting it all together, 3 year-old style.  We got out some fun clips and some combs and sat on the bed and they brushed and styled my hair from its stand.  Dressed it up with some of their bows and hats.  Way more fun - and much more hair to have fun with - than any Barbie.  Happy that my girls are far more resilient than I imagined.  Perhaps a real source of my strength.

July 18 - Halfway ALREADY?  ONLY halfway?

Here we are at the midpoint of my chemo.  I continue to physically feel rather close to normal.  Everything I was warned of really didn't happen.  Well not yet.  No nausea, no real fatigue, yes my hair is gone of course, but my nails don't show the telltale signs of chemotherapy treatment as I was warned...well not yet.  No weight gain.  Actually a bit of loss.  No mouth sores.  The famous metallic taste lasts only 2 days or so and it's tolerable.  My eyes are in a constant state of dryness and redness and swelling and burning that no cover up could fully correct.  This is by far the worst side effect so far.  But then again my allergies aren't helping either.  They are sticky and red.  Chunks of my eyelashes are missing.  I never had terrific eyelashes in the first place.  Short, stubby and sparse.  The best correction?  Chilled cucumber slices on my eyes and a few extra in an iced glass of Hendricks and tonic.  I used to think that was such an old man's drink.  On the other hand, I kind of look like one on my bad days.  And my nose runs, indiscriminately and without warning.  I never thought I'd miss the hair in my nose that's no longer there.  The lesson?  Don't dismiss nose hair until after you lose it.  It really is quite functional.  Stay armed with tissues at all times!  I would make a great spokesmodel for Kleenex.

My shoulder and neck and upper back continue to give me discomfort.  Please please please, let this surgery on Wednesday to replace my clotted port correct this stiffness and pain that likes to travel up my neck and make already broken sleep even more challenging.  I have never looked forward to - as well as dreaded - surgery.  I hate relying on pills for pain relief or to sleep.  "Don't be a martyr," my husband says to me.  He can't tell me to not be stubborn, however...

Less than four years ago, I would clutch my abdomen filled with two active healthy babies - as my middle grew larger and larger and I happily became more and more physically immobile and I reveled in the miracle that was happening inside me.  Quite similarly, I regularly run my fingertips with great anticipation across my breast with some amazement that what is underneath is getting smaller and softer, and again, rather intrigued by the changes of the size and shape inside of me.  Still miraculous.  But conflicted.  What was a bit of an embarrassment in my pre-teen years became something to be rather proud of - both round and fabulous C/D cups in college and long after.  It was once an object of sexual desire.  It fed three newborns.  Now it's just a puckered and scarred science experiment.  That I will only have for a few more short months.  I never considered that I would - and must, to be frank - outlive one of my body parts.  I look in the mirror and wonder who that person is sometimes.  No hair, red swollen sticky crusty eyes.  a formidable and protruding don't-mess-with-me scar on my opposite side of my chest that remains visible with many tops I wear.  I look like I belong in a Metallica video.  Should I look away or look a bit closer?  Pain I am unaccustomed to feeling and worse yet, sometimes difficult to locate.  Wait, it's not really in the mirror.  How is it that I can be healthy and thriving and feel so lost at some times?  I'm learning now, this is a journey of existential proportions.  There was no pamphlet in my hospital folder about that.

And now for something completely different...

Next week I may also find out the results of genetic testing I had done about three weeks ago.  This link proved to be quite informative for me:

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

And now for your bonus public service announcement, folks.  For instance, ladies (and guys), please know that family history of breast cancer matters on BOTH your father's and mother's side.  I have no known history of breast cancer on my mother's side but there is breast cancer on my father's side.  And, women AS WELL AS MEN can carry the BRCA 1 or 2 gene mutation and may never be diagnosed with breast cancer.  Men, however, have a greater risk for early onset and/or aggressive types of prostate cancers, which my father had.  While the odds of me being a carrier are still quite low, a positive test result means my likelihood of cancer recurrence of either breast or ovarian cancer skyrockets.  And it will matter regarding long term treatment planning.  I'm working hard to remind myself that, the nervous breakdown is over (isn't it?), and either result at this point is nothing but beneficial for me and to many in my family.  So:  It's vitally important to know your family's health history.  Who had what and at what age.  Start asking.  Know that men will find some value in understanding their family's breast cancer history for of course your female relatives but also for YOURSELF.  Just don't forget yourself.  The other lesson?  I don't have excess energy to worry about things over which I have no control.  I didn't before and I certainly don't now.  So whatever my personal test results are, it will be OKAY.  It will be BETTER than not knowing.

July 27 - Port Number Two

Let's just say, glad it's done.  Um, for anyone who has ever woke up in the middle of surgery - and realized they are out of anesthesia - and they could have used more - yeah...not cool.  Surgery went twice as long as it was supposed to.  Rerouted port twice.  But it's in, I still have some minor pain but it's constant, dull, predictable, and medicate-able.  Tylenol happiness.  Hopefully the adhesions that had formed around the first port was the source of the stingy pinchy pain that was driving me crazy.  Three more treatments.  Please, let me use this port without incident or excess pain for just three more times.  Is that so much to ask?  Like the warrior that I am, I did not want the girls to miss their dance class later this evening, so still in a morphine-percocet haze, Sean drove us over directly from the hospital and I watched for an hour of tap, ballet, creative movement, and gymnastics.  And giggles and fun in their cute blue dance dresses.  The Assistant Director Jennifer was there and I must have looked like, well I just came out of surgery with all my fresh bandages, tape, and no hair but just my hat.  Immediately concerned.  Just a mess.  I probably should have just gone home.  Those girls keep me going and keep me strong.  She came right out and asked me if everything was okay.  I explained my situation.  I still don't like to say it!  She offered the girls a chance for a bonus class if I need a break.  I broke into tears of happiness and exhaustion from withstanding a little too much pain for one day.  It's actually been several weeks since I've done that.  People out there really really care.  But extra bonus, at least my tear ducts are not blocked!  How refreshed my eyes felt after this good cry with real tears.  Lesson?  Systane is great, but real tears are way better.  Thanks Jennifer!

July 28 - WE ARE OFFICIALLY MORE THAN HALF DONE WITH CHEMO!  That would be 66% complete!

You know you must have been feeling slightly down and out when you return home from chemo feeling better than before you went.  Okay, for one thing, again, this *Chemogirl* is the star here.  We are ALL the most important people in the room.  And there are many of us.  Notwithstanding, *I* can do no wrong.  *I* can't be late, it's never *my* fault, everyone works furiously to ensure *my* comfort.  What can possibly be wrong with that?  Everyone else casts their petty worries aside and saves it for private conversation behind the nurses' station or for after their shift ends.  And for a minimal copayment, insurance picks up the rest.  Best deal in town.  I am still waiting for my hospital provided complementary mani-pedi.  Or how about a frozen margarita instead of the required ice pop to prevent the mouth sores during administration of one of the chemo drugs?  They must be saving that for my graduation present!

Doctor continues to be impressed with my progress and my lack of serious side effects.  Yes, my squatter-friend is still there but it's shriveling up and it's softer and mushier.  Understanding its eviction is fully underway, it tries to escape the grasp of my and my doctor's fingertips, moves around, what was at one time the size and texture of a hard boiled egg is now maybe more like a loose mound of the egg that now has been over-scrambled.  I visualize tiny chemo-pellets jabbing away at it.  It is still there, but different.  Not the soft suppleness of my pre-cancerous breast, but closer.  What was once easily handled and measurable is not so easy anymore.  Remember, these observations were made before today's fourth infusion.  Just halfway and the changes are staggering.  It almost makes me look forward to receiving subsequent infusions.  So between the good news, the forced relaxation complete with iPod, today featuring Adele, The National, Band of Horses, trashy gossip magazines, a cute guy nurse, and getting cleaned up and my saturated bandages from yesterday changed, left a more refreshed relaxed and most importantly, grateful person.

July 29 - A first!  But hopefully not an only...

Port feels better.  It is starting to feel like it is a part of me...again.  I feel better.  I don't feel like that Metallica video walk-on today.  Dragged myself and Ed out for a power walk with me around my favorite lake.  First time ever he wanted to come with me.  Great conversations that I'm hoping will become more frequent.  I am again reminded of the brilliant, thoughtful, sensitive, funny and insightful child I have raised into a man-in-training.  Many years on my own as his only active caring parent.  Sometimes I forget about this feat!  I am so proud of him.  I love him.  Sometimes I am scared.  But I don't show it.  And I don't tell him enough.  I learned this with the help of a social worker from the hospital.  I'm going to change this.  One final note for now:  Don't let precious moments like these slip away.  Say what you know you need to say.  They'll thank you for it.  The carb laden bagel and cream cheese break afterward didn't hurt either...I earned it, right?

Many steps forward, one big step back...

Felt so good these last few weeks.  Many days I have not thought about my cancer.  Maybe that's part of it.  Doing everything I've always done, just throwing a few extra doctors appointments into the mix.  Being aware of my body and its changes, not ignoring signs but not focusing too much on them either.  Am I not thinking enough about this?  Even getting used to wearing the wig.....why, I wonder, I have had hair on my head - thick, curly, long hair for most of my life - it falls out and I must try to get used to wearing new hair?  It is seemingly more and more like my own and not fake.  I'm starting to like it.  But strangely, I enjoy being able to remove it and go bald (mostly for just Sean and the Kobe Dog, who seems to have taken a liking to sniffing the top of my bare head) or top it with one of my soft pima cotton caps not unlike you'd put on a newborn.

The other day Gianna saw a picture of me and said,
"This is you with hair, Mommy."
"Yes, Gianna, " I said.
"You are wearing glasses in the picture too Mommy.  Hair and Glasses."
"Yes, Gianna."
"It's two Mommies"
"No, Gianna.  I'm still your ONE Mommy"
"Where is your hair, Mommy?"
"In the other room, Gianna, and my glasses are in my purse," I replied.
"Your hair is not on your head."
"That's right."
She looked twice back at the picture, back at me, and proceeded to finish her peanut butter sandwich.
And that's apparently about as far as I can go with a three year old.

Meanwhile, Ella told me she likes to "be like Mommy" .. the best thing I've heard in a while...

It's a look.  She likes to parade around the house in any of my shoes and giggle and mock me out.  "Simmer down!  I can only do one thing at a time!"

After I took Ella's picture, Gianna eventually came around and added an accessory to my tresses for a more regal look....watch out Kate Middleton!

I guess the lesson here is to keep it fun and light.  I still really don't know whether they understand that I don't have MY hair.  Perhaps they do.  My goal is to affirm to them that, it really doesn't matter.  I'm still me, I'm still their fun mom.  I just get to take off my hair whenever I want.  The bald will remain covered around them I think, for now.  I still try to grab the ponytail in the back of my head that's no longer there.  I still inadvertently grab clips and hairbands forgetting there's nothing to tie back.  But it's better.  Really better.  And a tiny bit of peachy baby-blonde regrowth, that promptly falls out every few days.  A visual reminder that my rebirth is fully underway.

July 3 - Don't ignore too much!
What I believe to be my first trip ever to a hospital ER.  I've spent far too long ignoring suspicious symptoms and trying to self diagnose.  Achy traveling pain running all around the site of my port, traveling up my neck, shoulder, around my shoulder, upper back, unable to lift my arm.  Excruciating! Called the on-call oncologist who reminded me that blood clots are always a possibility.  Am I swollen?  Am I short of breath?  Do I have a fever or other signs of infection?  Gianna had strep two weeks prior.  These are not the type of fireworks I had in mind for this weekend.

True to form, a cancer patient registering at an ER for possible complications from treatment are handled like celebrity VIPs at a club.  Open up the velvet ropes just for me, bypass all the other guests in line who are left outside for their turn in.  People thinking, "why does she get to go back there when I've been here longer?"  It's a strange situation for someone who until now has never been considered medically "vulnerable".  The energy I have used throughout this process to prove to myself and others that MOST days I am or will be at 100%.. to be treated in this way at the hospital is sort of a reality check.  No, you're only fooling yourself if you believe to be 100%.  Serious things can and do happen.  Even to unflappable me.

Full hair perfectly coiffed, I sat for about 5 minutes until they call my name.  I skip past the woman who thinks she broke her arm falling, the woman who complains she can't get warm, a few others, past triage staff right into what is deemed the "Red Zone".  People staring, probably thinking, 'What's wrong with her?  She's walking!'  Past all the other Red Zoners, white and cold, in beds and connected to tubes, most of them older and on oxygen.  I get assigned to a tricked-out semi private room with plenty of cold metal serious machinery.  No flowered sheets.  No TV.  Immediate attention.  The ER doc running through the litany of questions.  He's already been on the phone with the oncologist.  And the on-call surgeon.  Running tests.  Blood..ultrasound, X-ray, right away.  No, he says, I won't release you until I talk to your on-call one more time.  The hospital equivalent of the penthouse guest at the Plaza Hotel.

It still took upwards of 3+ hours to get out, but in the end seemed like a bad case of tendonitis.  No signs of infection, no visible blood clots.  Fire alarm?  Maybe so, maybe not.  A reminder that I am in charge but fully accountable for my care.  Yes, I guess I am medically vulnerable.  Yes, I have to rely on the people around me to guide and help me through this.  Yes, I guess I have to take a step back and understand that cancer treatment is serious business, and not a part time hobby, but from up until now has been an easy process.  It still could be so much worse.

July 6
Chemo number 3.  I believe every chemotherapy treatment should be a celebration.  One giant step closer.  More of the medications that will save and prolong my life and push along this rebirth.  Around people who care about me.  Because they want to.  These days are truly gifts.  Sean runs out to test drive a couple cars we may like to buy and to bring me lunch...turkey, Swiss on a spinach wrap and a celebratory coconut fudge brownie we share.  I catch up with the woman from three weeks ago who comes in for regular iron infusions.  Her driver even remembers me and asks about the twins.  It feels like home in a way.  My oncologist seems genuinely thrilled with my progress and the continued shrinkage of my mass, this time by roughly another 1 to 1 1/2 cm.  I look forward to the day he needs something more precise than a tape measure to mark progress.  I marvel to him at my complete lack of nausea and healthier appetite after treatment 2.

He says, cupping the back of his head, "well people who drink and some alcoholics have actually numbed their nerve sensors to the point that they are unable to feel nausea..."
"Okay then.  So what you're saying is that all that partying in college paid off then, in a way.."
"Um, well perhaps.." he added with a chuckle.

Today's celebration came with an added bonus I didn't expect - yet another reminder that just when you get comfortable, there's always a curve ball lingering around the corner waiting to hit the medically vulnerable you.  The port, which I have actually stopped thinking about, is clogged and has failed.  Crimped beyond adjustment between my rib and clavicle.  Must be removed and a new one implanted.  This lifeline that took me too long to get used to now has to be removed and a new one put in.  There is nothing to decide, I must have a new one.  Maybe this caused me pain over weekend, maybe not.  A reminder that yes, this process should be treated like a celebration of the spirit and soul but treated seriously in the physical sense.  More surgery.  Probably in the next three weeks.  More lessons.

July 7
I read - and wept all over again - for myself and over a friend's blog that she published today chronicling the start of her own breast cancer journey.  She is younger than me with three small children, including a set of three year old twins, just like me.  When I published mine, she read it, and told me that in reading my blog was reminded that she too needed to have a follow up mammogram.  Remarkably, she received her life altering diagnosis - over the phone - on the very same day as my first chemotherapy treatment.  I wept for her and her emotional pain of a roller coaster she is undoubtedly on right now but also in hopes that she too can find comfort in the release of online journaling, as I have.  And to remind others of the importance of check ups.  I have found my very own co-cheerleader and I hope she knows she has one in me.  We are fighting for ourselves and each other.
  
Finally picked up our new wheels.  We involved the girls and let them climb around in the back while the sales manager walked us around our new vehicle.  They were so happy sitting in the back and pretending to drive and practicing strapping in the seatbelts.  A new adventure for them.  They have only been in the van and our old truck twice.  The sales manager stopped and said, "both your girls look like you....especially your hair."
"Yes", I said, smiling. "they're a lot like me..."
And that's a good thing.