Tuesday, June 11, 2013

The Great Wait

It's been a while since I updated.  Frankly, things got a little ugly, and writing about it in situ was a bit more than I could manage.  I'll go back to that in a later post, but for now, let's stick with today...

I finished chemotherapy in early April and took a month off of cancer treatments before diving into radiation treatment.  Feeling like a normal, healthy person for a couple of weeks, once the side effects of the chemo dissipated, was absolutely necessary for my mental health, and my physicians agreed that it was fine for my physical health as well.

So today, I'm off to radiation treatment number 20 of 28 total treatments.  A week from this Friday, I'll be "ringing the bell" they have at the office to celebrate the completion of my radiation therapy.  It will be a pretty exciting day.  We've been dealing with this in some form or another since Thanksgiving, and it's about time.

We'll celebrate with a fabulous trip to an all-inclusive family resort in the Caribbean with family and friends.  We'll have parties and champagne toasts to good health.

And after that, it begins:

The Great Wait.

Every cancer patient can tell you about it--it's a one to five+ year period of...waiting; of hoping for nothing at all, marked by semi-annual appointments with a variety of physicians who draw blood, poke and prod, all while asking a series of questions.  A period in which any ache or pain could be simple aches and pains, or the sign of something sinister.  Is it a sinus headache?  Or a brain tumor?  A crick in your back?  Or an osteosarcoma?

Don't get me wrong--we're all happy when treatment is over; however, there is a sense of power and strength in knowing that you're undergoing treatments.  You are Fighting the Cancer.  After the treatments...The Great Wait.

Granted, there are many things we can do to improve our chances of Fighting the Cancer: exercise, organic/clean eating, limiting sugars, incorporating antioxidants in our diet.  But honestly, it's kind of comforting knowing that you're getting physical treatments from actual physicians designed to kill of malignant cells that may be laying in wait.

That said, I'll be glad when it's time for The Great Wait.  It's easier to keep a positive, healthy attitude when your body isn't under assault from the very treatment designed to keep it alive.

Saturday, March 2, 2013

Just Being Real

So, it's been a couple of weeks since I've managed to draft up an entry here.  Honestly, the whole chemo thing is getting a bit too real for me.

It was very easy for me to have a positive attitude going in--that's just me, and I have enough experience with this to know that the whole fighting-cancer-yet-again thing will be a distant memory soon enough.  It was even easy to be excited when I discovered that these new fabulous chemo drugs were not going to leave me a nauseous, miserable mess with a mouthful of sores for a week every month.  And unlike my past chemo treatments, my blood counts are normal or near normal in many cases.  Unlike past chemo treatments that left me with dangerously low white blood cell counts, my white cells are in the normal range, even after seven chemo treatments.

I've been a lucky, lucky girl.

As my readers know, I have been counting down my treatments with a bottle of champagne each week with my Champagne Sister, Sonya.  I was really looking forward to the half-way point: treatment number six of six.  My sixth treatment was last Friday, so I invited some of my neighborhood gals over to join my Champagne Sister and me in some bubbly on Sunday...not a huge party, just a few fabulous gals who all live within a mile or two.

I went into treatment six feeling a little low, and I came out a hot mess.  Perhaps it was the lousy weather that day?  Regardless,  I went up to my bedrooms, got into my pajamas, watched bad afternoon television, and cried on and off for several hours.

It's not as if I was feeling super sick or miserable.  For whatever reason, treatment six made me see that, regardless of how much easier this chemo regimin is that my past treatments, it's no cake walk, and I can't just plow through this time with a couple of 1-2 mile jogs and a case of champagne.  I need to be a little honest with myself.

Anemia Stinks

While most of my blood counts are normal, my red cells aren't.  They're not terrible--I wont need any transfusions...they levels are just, kinda low and lousy.  What does that mean for me?  Well, my red cells aren't well oxygenated, so exercise is hard.  Heck, I'm even getting tired walking up the stairs--and that's just maddening, given that I was running up to 5 miles just 2.5 months ago.  

My brain is also foggy, nearly all the time.  I'm easily distracted, and I can't multitask, which is typically a strength of mine.  At times, I'll be mid-sentence and I can't get my brain to spit the rest of the words out of my mouth.  

And the clumsiness.  If you know me, you realize I'm not a specimen of grace.  But my clumsiness is at an epic high.  A trip to Sephora with a friend this week found me dropping or knocking into product all over the store.  Charming, huh?

Oh, the Hair

In my past experiences with chemo, I've lost all my hair around Week 2-3.  When this did not happen, my friends and family started asking, "Do you think it may not come out?"  Of course, I've been afraid to ask that same question myself.  Now, at Week 7, the signs of hair loss are showing.  Small handfulls of strands of hair  come out when I brush.  Larger amounts come out when I wash my hair.  Fortunately, for now, my thick hair is helping here...and I still seem to have "normal" looking hair to most everyone.  Some of my friends can tell a difference, but only because they are looking for the change.  Because of my fabulously talented friends, I have a whole small drawer of gorgeous handmade hats to help me cover my hair loss when the time comes.  And I have 3 adorable wigs to go with my moods, and a bag of hats and scarves that my Champagne Sister has loaned me in the meantime.  On the surface, I'm ready for this.

But all of the sassy wigs and adorable hats only cushion the blow: who is ever ready to waking up each morning and seeing Cancer with a Capital C staring back at you in the mirror?  It SUCKS.  The hair loss SUCKS.  Even though she is nearly a year out of treatment, my Champagne Sister still looks in the mirror at her adorably cute, sassy, short hair which she knows does not look remotely like a post-chemo do...and she is still reminded of Cancer with a Capital C.  She didn't choose to have short hair...her shoulder length tresses were ripped from her head by toxins and she wants them back!  

Yes, it's only hair.  But other than surgical scars that are easily covered with clothing, it is the only visual reminder of our journey...and it SUCKS.

Did I mention that the whole hair loss thing SUCKS?

Is The Sun Ever Coming Out Again?

This winter has been especially painful here on the East Coast/Mid Atlantic region.  We have not been pounded by snow, as they have been in New England.  But those painful weather fronts, with their barometric pressure changes, dark clouds, and rain showers have hit us here in nearly constant waves.  Last Friday, during that "half way through" chemo treatment, we had driving, cold, nasty rain all day.  Everyone I know is "over" this winter.  We haven't had much snow, we've only had dreary, cold, lousy weather for months.  Even as the days get longer, the lack of natural sunlight because of the omni-present clouds combined with weather fronts, barometric pressure changes, and lousy rain seem to be mitigating the effects of the longer days on our moods.  

Having chemo is no fun.  Having chemo in the midst of lousy weather and low sunlight levels brings the hell to a whole new level.

I Get By With a Little Help From My Friends

Fortunately, I had planned this little shin-dig with a few neighbor ladies before my half-way-through-blues kicked in.  We drank champagne, ate a little food, and generally just enjoyed each other for a couple of hours.  It was like a breath of fresh air.  Sunshine flooded my room, not just from my windows, but from my friends who were genuinely happy to be celebrating a real milestone with me.  My Champagne Sister and I downed another bottle of bubbly (and then some) the day before Chemo #7.  The case of champagne is now half empty...we'll be drinking that last bottle before we know it.  My family continues to be enormously supportive and generally wonderful.

In Summary...

Yeah, this whole cancer thing got real last week.  Cancer treatment just SUCKS (yes, this post was brought to you by the word SUCKS).  Worrying about various post surgical lumps and bumps SUCKS.  Wondering if you are over or under treating your illness SUCKS.  Walking into an office every Friday to voluntarily have poison injected into your veins SUCKS.  It's not fair, and there should be a better way to treat this creature that keeps trying to invade my body that doesn't involve exhaustion, nausea, and hair loss.

But, as they say, after winter, there will be spring.  And to use another overused platitude, I get by with a little help from my friends.

Wednesday, February 13, 2013

Looking Forward/Looking Back

About 10 years ago, a co-worker introduced me to Groovelily, a band that was performing live at a local venue.  I quite enjoyed their quirky pop style, imaginative combinations of jazz/blues/folk/rock, and thoughtful, meaningful lyrics.  I went to several of their shows and listened to their albums nearly incessantly for about a year.

About the same time, my future husband was making plans to move East so we would no longer be a bi-costal couple.  Groovelily's song Looking Forward/Looking Back became my anthem of the fall/winter of 2002-2003, while our visits were at the whim of our work schedules and cheap airfare options.  The lyrics describe the pain, anguish, and jealousy the singer experienced during the year that his love was touring the country--sometimes with him, sometimes without him.  He was "Looking Forward to Looking Back" on that year.  I, too, couldn't wait to be Looking Back on my time apart from my future husband.

The Champagne Sisters First Bottle: Looking Forward to Looking Back

The day before my mastectomy, my Champagne Sister and I had our very first bottle of champagne together.  She was not even a full year away from her surgery, so her memory was very fresh.  In addition to being generally sympathetic, supportive, and helping me get my pre-surgical buzz on, she gave me her many tips on what to wear after surgery, what to ask for at the hospital, and even shared one of her comfy post-surgical bras to help deal with post surgical pain.

During our visit, we debated which was worse: being anxious about a future procedure while not being in any physical pain, or dealing with post-surgical pain, but knowing it's over.  We both decided that we'd rather be looking at our surgery in the rear view mirror, post-surgical pain and all, rather than dealing with the anticipation of the procedure.  In other words, we would prefer to be Looking Back.  That became the theme of our visit: we decided another bottle of champagne would be in order after I'd recovered from my surgery to celebrate Looking Back.

The Surgical Experience: Most Definitely Looking Forward to Looking Back

This proved true for my most recent surgical experience--my right mastectomy.  Due to a series of uncontrollable issues, my 4 pm surgery was pushed back to 8pm, but not until I was at the hospital, hooked up to the IV and doning my fabulously fashionable hospital gown.  As the hours ticked by, my anxiety ratcheted up, until finally, the anesthesiologist gave me Versed, a miracle drug that takes away anxiety, fear, and even impairs short-term memory (which is a good thing when you're about to have parts of your body removed...)  Believe me, waiting on surgery in the hospital is one of those moments you want to forget--bring on the amnesia-inducing medications, please!

I was so incredibly relieved when I woke up post surgery.  I knew that the healing was beginning that very minute.  While the next 10 days were less than pleasant, I knew they'd pass quickly and I'd soon be on the other side, Looking Back on the experience.  I decided that there's nothing enjoyable or redeeming about anticipating surgery.  Oh yes, Looking Forward to Looking Back was the way to go!

Then Came the Cancer Diagnosis, Part Tres...

...and all at once, my mastectomy that was supposed to be preventative turned out to be a life saving procedure and I was again thrust into the world of oncology.  Surgery is a one shot deal--go in, have your procedure, and recover.  Oncology involves several months of treatments, consultations and follow-ups.  Cancer is a tenacious beast, and killing it takes time.

Surgery is a milestone event: oncology is a journey.

Assuming all goes as planned, I'll be through with treatments and happily moving through remission to cure in about 6 months.  Am I ever Looking Forward to Looking Back!

But here's the thing: when we're going through a difficult spell, it is sometimes tempting to focus on the end-game to the exclusion of the journey, especially when the journey is uncomfortable.  Ultimately, we are changed by difficult experiences, but do we pay attention to the change as it's taking place?  Or do we focus so much on Looking Forward to Looking Back that we miss the valuable life lesson on our own change as it takes place?

Personal growth doesn't always come easy--it's usually slow and often wrought in struggle and even pain.  Don't get me wrong--there's nothing wrong with focusing on the finish line and keeping your eyes on the prize, whatever race you are running!  But paying attention to the change as it happens is a gift that's worth its weight in gold.  The prize is not just finishing the race and Looking Back: it's a window into the evolution our our soul.  Don't miss it!


By the way--if you want to hear the awesome song Looking Forward/Looking Back by Groovelily, you can check it out right here.

Thursday, January 31, 2013

Week 2...Not Productive...Does it Matter?

Aside from my morning coffee, I don't spend much time sitting down.  I am almost always moving--doing something...being productive in some way.  Exercising, straightening, cooking, working, shopping...something.  I'm always moving.

But in all honesty, I've felt like this has been an unproductive week.  I was able to run some errands this weekend with surprising energy and that felt really good.

But, then Monday hit, and the kids were home because of an ice storm, so I got nothing productive done.

On Tuesday, my son was home with a cold, so I got nothing productive done.  And I ended up crashed out on the sofa most of the day, not feeling great.

On Wednesday, everyone was at school, so I went for a quick jog and went out to a movie with friends while the kids were at school.

And now, today, it's Thursday and my daughter is home from school with a cold.  I had planned to get all the grocery shopping done before Round 3 (ding ding ding!) but now I'll be home all day.  I am ENORMOUSLY frustrated by this turn of events.  I have meals to plan!  I have food to buy!  I have dinners to make!

I hate feeling unproductive.

On Monday, there was no school.  But my son got to spend the day with his best buddy, and I got to crack open a bottle of bubbly (and then some!) with my Champagne Sister while our girls played dress up, watched movies, and turned themselves into Princess Zombies.  We all had a great afternoon.

On Tuesday, my son's cold made me take the afternoon on the sofa.  My body needed the break, and I didn't see the signs until I stopped moving.  And a friend surprised us with dinner, so I didn't even need to cook dinner.  

On Wednesday, I got to go jogging for 30 minutes OUTSIDE in JANUARY in 60 degree weather.  What a gift!  And I spent time watching an Oscar contender with friends...got a surprise visit from my dad...watched a movie with my family while enjoying another meal brought by a friend.

And today, I have an opportunity to spend a little time with my daughter, helping her with her science assignment, playing a game or two, and maybe curling up together and watching a movie.
Just because this wasn't the week I had planned doesn't mean it wasn't productive.  

If I judge my productivity based on the number of checkmarks on my "to do" list, then sure.  I'm a loser.  But when I looked into 2013 and made my plans for the year, there was no checkbox for "get another cancer diagnosis." or "undergo chemo" in my list.

You'd think by now, I'd learn how to roll with it a little better.  Or maybe I'm spending so much time trying to throw my positive energy into the whole "this cancer thing is no big deal" that my positive energy store is a bit low for the every day.

And perhaps I should just cut myself a little slack for not being Suzy Sunshine all day, every day.

Friday, January 25, 2013

Round 1 Done, Ready for Round 2

"I'm fine.  Really fine.  Normal!"  

I've said this so many times this week, and I haven't grown tired of saying it.  I FEEL FINE!

It's never been like this before.  I'm on drugs that are lethal to cancer while also being less toxic to my body.  Sure, there are some side effects.  I'm a little less energetic, I had some dizziness...a little chemo brain.  But so far, there has been no nausea, vomiting, or general feeling of "unwell" that comes with typical breast cancer drugs.  

I'm also taking endorphins--as much as possible.  And on that note...off to the treadmill to prepare for today's Round 2!

Here's hoping that Round 2 is similar to Round 1.

Monday, January 21, 2013

Day 3--No One Cares How Fast Your Pace

Every former chemo patient knows about Day 3.  That's the day that the drugs have had enough time to wreak havoc on your body and you finally feel the full effects of your new cocktail.

Yesterday was Day 3.  When I woke up and rolled over to look at my phone, my Champagne Sister had sent me a text...with a nod to Beethoven's 5th, she said: 'Da na na na....And we have arrived at day 3.  How do you feel?"

(First, take a second to note how she says "we"...how lucky am I to have people who are truly in this with me?)

I had to take a minute to wake up and do a self-assessment.  Nausea?  Nope.  Body aches?  Nothing other than the usual 40-something cricks.  Malaise?  Nothing unusual...

I knocked on my wooden nightstand for good luck and told her that I was feeling surprisingly good.  Don't get me wrong...there are a few side effects.  The craziest one so far is this odd vertigo.  Every once in a while, I feel like the world turns about 5 degrees on me and I have to take a second to reorient myself.  I also seem to be hitting the wall a lot more than usual, but nothing significant.  This new drug cocktail is nothing like I've had in the past.

I had planned to do a stint on my elliptical, so I went down to get my coffee and gear up for a few minutes of pedaling in place when my dad knocked on the door.  Remember how I said I live in Mayberry?  Yeah, I do--my parents live down the street--pretty cool stuff.  Anyway, he was coming back from his run to check in.  Apparently, it had warmed up quite nicely and he suggested I go for a walk and get some fresh air instead of pedaling in our basement.  So I donned my running clothes, found my headphones and Spibelt, and headed out the door.

I decided to try jogging for a bit.  I didn't set a quick pace: it had been over a month since I'd gone running, and honestly, I hadn't stretched because I wasn't planning on a run.  A slow jog, maybe a 13 and a half minute mile or so, and I didn't know how long I'd last.

Turns out, it was 2.5 miles.  It was slow, steady, and it felt fabulous.

The thing about runners--none of them care how fast your pace--as long as you are running.  Even your 6:30 minute milers will cheer on your 14 minute miles: if you are out there running, you're part of the club.  The race isn't for first place for most of us: the race is to do our very best; beat our best time, go a little faster than usual, or just get out on the road when we don't want to get out of our pajamas.

So yesterday, on my Day 3, I ran 2.5 miles.  I visited with my parents.  I went to Total Wine to pick up the 12 bottles of Prosecco for our weekly celebrations, went to Costco, and had dinner with great friends at their house.  I crawled into our king-sized bed with my family and watched a recorded show, then fell asleep, weary from a long day, and very happy.

Day 3 can kiss my sweet fanny.

This morning, I woke up a little sore...from the waist down.  That's from those 2.5 slow miles without stretching...not from the drugs.  That's kind of awesome, don't you think?

No one cares how fast your pace, friends, just run.  Run...walk...jog...and if you can't do that, do whatever you can do today to maintain a forward motion today.  Day 3 can be the toughest for us chemo patients: just getting out of bed on Day 3 can be a challenge.  Running for you on Day 3 may just mean getting in the shower and coming out of your bedroom.  And who knows? Next week, Day 3 may hang me out to dry.  But this week, on Day 3.  I ran.

Friday, January 18, 2013

Dead Hair Walking

Yesterday was the first round of my latest chemo cocktail, and so far, I feel very much this morning like I felt yesterday morning.  I even hopped on the elliptical for 30 minutes.  I'll have some side effects soon enough, but for now, it's nice to have the first round out of the way AND to still feel good.

Chemo treatments themselves are almost a non-event (baring any immediate reactions, say...anaphylaxis, to your drugs...but I digress).  You go into an infusion room to join other folks sitting around with IVs,  take your place in a fairly comfy recliner, and then wait for the nurse to get your IV going.  You sit for 2-4 hours while you get your meds, then you pack up and go home.

But each time I've had my first round of chemo, as that first drug made its way down to the IV on that first treatment, I've thought, "Well, there goes my hair..."

Yesterday, I came home from my treatment and the first thing my son asked was, "Has your hair started to fall out?"  Leave it to the 9 year old boy to address the elephant in the room.

I have Dead Hair Walking.  It's gonna happen: it's gonna go.

Chemo induced hair loss just adds insult to injury.  You have a life-threatening disease, you have to have drugs that make you feel icky to combat the disease, then you have to go around bald for 3-6 months.  The bald girl in the mirror is a reminder, every day, of cancer.  If it weren't for the baldness, you could go a couple of days without thinking about cancer, even during your treatment period.  But that bald chick stares back at you every day from the mirror.

Typically, hair loss doesn't start for about 2 weeks after the first round of treatment.  With some drug cocktails, it all falls out at once...with others, it gradually thins until one day, you've got to pull out the razor and put on the wig/hat/scarf.

That day can be absolutely heartbreaking.  We women LOVE our hair.  It's the primary way we express ourselves, and when we lose our locks, we feel like we lose a little bit of our identity.  And for maybe the first time in our course of treatment, we actually look "sick."  And to make it even worse, as the hair falls out, it actually hurts--like a needle piercing your scalp as each hair follicle gives up the ghost.

Champagne Sisters

I have a Champagne Sister this go-round.  Her name is Sonya--she lives less than a block away and had a double mastectomy right after Christmas last year, then went through chemo last spring.  She's my champagne sister because we've recently taken to opening a bottle of champagne and drinking it in fancy flutes to celebrate our successes in our journeys   She's committed to helping me celebrate each round with a bottle of bubbly...what better way to count down from 12?

I first met Sonya the day that her hair was falling out.  We both live in an awesome neighborhood: there are 40 children who get on the bus at the same bus stop nearby.  Our kids have lots of friends for play dates, and many of these kids have fabulous parents.  Really, it's like living in Mayberry.  The morning bus stop can sometimes be the highlight of my day as I catch up on the latest with the Bus Stop Moms.

Last winter, I had heard through the Bus Stop Grapevine about Sonya and that she was going through breast cancer treatment.  I had wanted to meet her, but with 40 kids and associated parents each morning, it hadn't happened until her one particularly painful day.

Sonya had few tears in her eyes and a gaggle of friends saying all the kind things they could think of to comfort her as she was losing her gorgeous tresses: "It will grow back."  (It's true.)  "You're still beautiful." (Also true--really, Sonya is gorgeous.)  Everyone was incredibly supportive of her.  My first words to Sonya were something like, "I've been there, it really sucks, doesn't it.  It just sucks."  Sonya was surrounded by friends who wanted to love her through this horrible day, and here's me: stranger, survivor, saying, "It just sucks.  And it's painful, isn't it?"  She had beautiful wigs to put on her head...but she couldn't--because her balding head HURT TOO DAMN MUCH.  I ran over to the local hospital and found a couple of cheap but cozy terry turbans for her and left them on her doorknob to get her through the next couple of days.

Rocking the Bald

Turns out, though, that Sonya was able to Rock the Bald.  I never saw the same thing on her head...she discovered hats and wigs and scarves, and they all looked great on her.  And by the first day of school this year, she had the most amazing haircut--her super short hair had style!  She not only Rocks the Bald--she rocks the super short regrowth.  Amazing.

So, when I found out I'd be losing my hair YET AGAIN, I went to her for advice on what to wear.  In 1995, I had a wig--but that wig was in such bad shape that it got tossed in the trash after the one time I wore it in 2004 (to stand up at my children's baptism.)  In 2004, I wore hats and turbans.  I didn't care much what I looked like:  I was too tired, and between chemo and infant twins, I rarely left the house, anyway.  This time, though, I want to Rock the Bald, just like Sonya.  So she shared her scarfs, wigs, and scarf tying techniques with me.  She introduced me to her Wig Diva and helped me pick out three new wigs.  She told me to check out Target for supplies--where I found hats for $9!  I then went online and bought a few hats and some bangs to put under them.

I also decided to get a henna tattoo on my bare head that says, "Christy 3 Cancer 0."  Why not?

I am going to Rock the Bald, just like my Champagne Sister.

Now, make no mistake.  The day the hair goes will suck.  I've spent nearly 2 years growing my hair out.  I can finally put it back in any style I want.  I'll go next week to get my hair cut short--and I don't want to!  Losing my hair SUCKS!!!  I don't wanna!

Friends, sometimes it's okay to say, "this just sucks."  Our journey has painful moments, and it's okay to embrace the pain.  Be sad, angry, frustrated.  But then it's time to pick up a champagne flute with a good friend, toast your future good health, and figure out how to Rock the Bald.

Eventually, you'll discover that the baldness is not a sign of your illness.  It's a scar--a sign of your strength in battle.  Be proud: hair or not, you are beautiful.