A New Normal

I've heard the phrase "a new normal" at least 4 times now by various healthcare practitioners ... which makes me think it must be a popular chapter in the Guide to Life After Chemo Manual .... or The Cancer Survivor's Handbook ....  or How To Get on With Your Life Now That Your Surgery and Chemo are Over ...

The conversation in which it comes up goes something like this:

Benita: I'm just wondering if my life is going to get back to normal one of these days ...

Healthcare person:  Well, you can't expect it to ever be the normal that you once knew ... it will be a new normal from here on in.

Benita:  I feel a song coming on ....

So here I am ... waiting for the new normal to kick in.  Anytime now.  I'm ready.  Oh, but wait - the chemo is over, but now I have the radiation to get through. (5 treatments over the next few weeks - starting on Wednesday).  And I still have no hair (I've gotten used to bald Benita ... but the days are getting colder and it's amazing how much your hair keeps you warm).  And I still get super tired from doing what feels like very little.  And I'm still spending too much time in my house - it's way beyond cabin fever at this point. Please don't tell me that THIS is the new normal!  

I don't mean to be cranky, but I do feel a bit cranky - which is largely why I haven't written anything for a month - because I wanted to wait until I was finally basking in the relief, the joy and the enlightened glow of my new normal.  Well folks ... I'm here to tell you that we're all going to have to wait a bit longer.  And I'm trying to be patient and not to feel too dismayed.

The tricky part is that I have had to start integrating things back into my life that were central to "the old normal."  Because it feels like I should be able to get back into it by now.  Like my work (as in - what pays the rent) for example.  I've been trying to work a full load for a while now, and I'm telling you - it is far from easy.  My brain is functioning, thankfully, but it's on SLO MO and everything takes a lot longer to accomplish. I've also been trying to get out more - simple things like taking Gracie for a walk around the neighborhood.  Or driving over to Whole Foods or Trader Joe's to do a bit of grocery shopping.  But it wipes me out!  I can do it, but not without getting really tired.  

So that's my status, at present.  Of course I feel much better now that the chemo poison is no longer being pumped through my veins ... but I wish I felt remarkably changed and positively energized  -- you know ... like able to leap tall buildings in a single bound kinda stuff.  THAT kind of new normal.  Yeah right.  

It reminds me of that old joke about the woman with a broken arm who asks her doctor if she'll be able to play the piano once her cast comes off.  You know the punchline to that one, right?  

Well ... at least I know that I'll be able to play the piano again.  And the guitar.  And write songs about my new normal.  Maybe my new normal will include winning a Tony award: Cancer - The Musical.  Don't laugh. It could happen.

I'll let you know how the radiation is going.  It should be done with by mid-November.  I've been told that it won't be nearly as horrible as the chemo ... I just might glow in the dark for a while.

Kidding ... I think. 

Last Train to Chemoville

With apologies to Crowded House ... I tweaked a few lyrics of this song:

There is freedom within, there is freedom without
Try to catch the deluge in a paper cup
There's a battle ahead, many battles are lost
But you'll never see the end of the road
While you're tethered to a chemo IV

Hey now, hey now
It's really over!
Hey now, hey now
When the world comes in
They come, they come
To build a path to health again
I know that I can win

Now I'm walking again to the beat of a drum
And I'm counting the steps to the door of my health
There're no shadows ahead, no more clouds in my mind
Get to know the feeling of liberation and release

Hey now, hey now
It's really over!
Hey now, hey now
When the world comes in
They come, they come
To build a path to health again
I know that I can win

Last chemo infusion today.  Below - a photo montage of this journey.  I WILL keep blogging ... however, a new chapter will begin soon.  YAY!

Moments before being buzzed

 Being buzzed

 Buzzed

 Tim biding time while I get infused.

 Infusion #2

 Infusion #3.  Taken through a dirty lens, my fellow chemo pals, Sarah, Sandra and me with wigs and scarf.

 Wigless and Scarfless

 Benita in Sandra's Wig!  

What a ride!  Can't believe I'm able to sit here at my computer tonight.  Already a good sign that it may not be as bad as last post-infusion time.  They reduced my dose 20% today ... hoping it won't hit me as hard starting tomorrow (like it did last time).

I have every intention to keep blogging.  So stay tuned. Next comes a sprinkling of radiation.  Not sure when yet.  But it's in the process of being reviewed by my insurance ... probably late October.

It still hasn't hit me ... that this part is winding down.  I say winding down because I do expect to be not so great for the next week ... and chemo-brained for quite a while longer.  But ... who knows Hope springs eternal!  :-)

With a song in my heart ....

Probably more than I need to return to any aspect of my "previous" life ... I need to get back to my music.  Writing music, singing, playing ... sometimes performing  - that is the common thread that has held my life together since I was a young child. 


Music has seen me through some very rough times - severed relationships, broken hearts, financial challenges, the loss of my parents and other loved ones - and the usual variety of feeling lonely, bewildered and lost.  More than any other kind of therapy  - music has saved me time and time again.  I honestly can't imagine getting through life's roller coaster without being able to pick up my guitar, sit down at the piano ... or lift my voice in song.  I have been so blessed with this gift - and I so often take it way too for granted.


For obvious reasons, I've had to take a bit of a hiatus - and I've missed it terribly.  I have conjured up several melodies in my head ... some lyrics now and then ... but have not had the inclination (focus, more likely) to follow through.  More than anything else, I am praying that I'll be able to get back that *thing* that I lack at present - that will enable me to create again.  More than anything else - THAT is what will make me feel like ME again.


Perhaps once all of this poison is out of my system. 

Tuesday is my last chemo treatment.  Dreading it ... but singing hallelujah at the same time. 

Benita vs. Benita

It's been a while, I know.  Been in a bit of a slump ... nothing wrist-slitting bad; but I have felt like my head is in danger of exploding into many pieces. 

I was blind-sided by the last chemo infusion on Sept 6  - it knocked me down much harder than the first treatment ... after being told that the first one would be the roughest!  I'll spare you the all the details, but some of the highlights were: not being able to move for almost a week, FEET pain (ankles to tippy toes), lots of laying in bed and moaning, and, in general, being really pissy about everything.  I was a joy to be around ... ask Saint Tim who took off work and stayed here with me for almost a week. It was rough.

And so it began - the battle of the Benitas.  When I start to feel too depressed, my brain gets even more jumbled than it is to begin with and the Benitas start duking it out.  A point in time when the voices inside my head really have a field day ....

Benita #1:   You need to pull it together and be strong.   Stop your whining and be grateful!  What about the people you know who, right now, are fighting REALLY tough battles with cancer.  They are more than just acquaintances; they are friends - wonderful,  talented, giving, vibrant people who are facing death-defying, horrible stuff ... being stretched to their limits in terms of enduring surgeries and treatments. Compared to what they are going through, your experience is a walk in the park.  There is more than a little light at the end of the tunnel, for you.  Your news is good news.  You need to cool it with the self-pity and get a grip. 

Benita #2:   STOP scolding me!  I mean .... shit, man ... gimme a break.  I've been going through this obstacle course since May.  I am soooo tired of not having my life.  I am sick of the inside of my house.  I am weary from laying in bed and wondering who I'm going to be after this is all behind me.  Will I ever be SANE?  Will I be able to move past this without indelible scars?  Will I be living in constant fear of the cancer returning and the prospect of having to go through more of this?  Will I ever be NORMAL again?

Benita #1:  And don't forget about how remarkable and amazing your friends and family have been! The pouring out of love and support and assistance from SO many people.  You are indeed blessed.  Not to mention that you are still employed after all of this time - at a company with people who care about you and value you.  So many healthy people are unemployed right now.  It is a miracle that you still have a job!  So are so lucky in so many ways. 

Benita #2: I am dreading the thought of the next chemo infusion - if it's anything like what I just went through.  It was really bad and I felt really helpless.

Benita #1:  Oh boo hoo!  Geez -  it's your LAST chemo treatment!  How great is that ... and you only had to have THREE!  So many other people have so many more treatments and get a whole lot sicker than you!  Stop your sniffling and just deal with it, would you!

Benita #2:  Well ... I am feeling a LOT better now.  And I guess it's not the end of the world.  It's actually not even close to being the end of the world.  I heard about the movie Contagion (not on my list of movies to see right now) - those people have something to bitch about. 

Benita #1:  That's the spirit.  Stiff upper lip.  You can do it.

Benita #2:  Plus, if it's really horrible again, I'll just make light of it and fun of myself in my blog.

Benita #1:  Atta girl!  There you go!  Just turn that frown upside down.

Benita #2:   You gotta be kidding me.  I'm going to sleep.

Benita #1:  Good luck with that  ....

The Chemo-Coaster ... E ticket ride

E is for energy  ... and the anticipation and excitement that goes along with not knowing from hour to hour, day to day if you will have any!  Had my 2nd infusion on Tuesday ... and the weepy woozies hit a lot faster and stronger this time - which makes me think that perhaps it will lift sooner than first time.  At least this time round I know the drill.


Trying to keep my spirits from sinking too low ... it is no doubt another major side effect of the chemo ... my emotions are being held captive to the drugs that are coursing through my veins.  Trying to turn it around and imagine the drugs eating up the negative thoughts that pop into my chemo brain.  It takes energy to constantly remind yourself that this is a transient condition.  I'm betting that tomorrow will be much better.


My darling buddy Tim took some days off this week to come down from SF to be here with me ... and even though I'm lousy company at present, he seems to be weathering the circumstance fairly well.  It's a comfort to know that he's here.


In case you're wondering ... I posted one of the photos I took two weeks ago at the Mountain Winery - as a reminder of how comparatively great I felt  back then -- and will feel soon again.  Jeff Bridges and a kick-ass band.  Cuz Barb nailed two 3rd row tickets and it was sooooo good to be there.

The local community gathering place, a lovely coffee house in my neighborhood - Cafe Zoe - is going to have live music all day on Sunday to commemorate 9-11.  Kathleen, wonderful person and owner, asked if I would be feeling up to coming in and singing a few songs of hope and peace at some point during that day. I really would love to ... so holding it up as a goal.  Looking for the fog to lift and a few songs to rise.  :-)

Back in the saddle again ...

Another milestone.  I worked a full week this week! 

Granted, I'm not putting in the 60 - 70 hour weeks that I was regularly clocking before I found out that I was sick (do you believe what it took to get me to slow down?!)  Working full-time for a successful high tech company (www.vidyo.com ) requires a level of energy and stamina that I hope to eventually return to ... but I hope NEVER to revisit the kind of work stress that I was experiencing prior to my diagnosis. 

My company and colleagues have been supportive beyond belief ... I am so very fortunate to receive this kind of understanding and support.  Which is all the more reason that I want to get in as much work as I can when I'm feeling able.  The only rather frightening aspect of this is the "chemo brain" phenomenon.  It is a REAL physiological thing and it does make what I do extra challenging. 

What I do more than anything else is WRITE.  And while it's relatively easy to jabber on in a stream-of-consciousness mode for this blog ... it's quite another thing to try to muster up the brain power and focus to write a coherent press release or business case study.  Needless-to-say I have to double and triple check everything that I do -- and I've caught a few major ummmmm ... shall we say boo-boos ... ranging from grammatical inconsistencies to downright nonsensical gibberish.  It's more than a bit disconcerting. 

However ... the bottom line is that I am able to sit up at my desk (I have the great fortune to be able to work out of my home office) for more than 15 minutes  - even more than an hour - at a time and almost feel like a productive, contributing member of the human race.  Hallelujah!

Look Ma, No Hair

AAAAAAAARGH!  My dear friend Andrea was there for moral support and to document the shearing event.  This was taken after I stopped crying and resigned myself to accepting my hairless self.

Hair Today Gone Tomorrow

I believe the time has come.  My scalp is feeling all sorts of weird and although the hair is not coming out in clumps yet ... when I run my fingers through my new, sassy short do ... I get multiple strands of my locks in my hand. 

The questions is ... do I have the guts to walk down to the local hair place and tell them to shave it all off?  It's one thing to know it's going to happen  ... but now that the moment is upon me ... YIKES.  I don't care what anyone says ... though I will learn to deal with the temporary baldness while it lasts (probably about six months or so), seeing myself for the first time with no hair is gonna be one heck of a bizarre event.  There's no easy way for this to happen. Unless I chicken out ... I think tomorrow is the B-Day.

I've been feeling really good since my last blog post. Walking every day ... back to working part time ... much more energy.  That is likely to change again with my next chemo treatment (Sept. 6), but at least I know that I'll just as likely rebound after 4 or 5 days.  And then I will only have ONE infusion left.  I sooooooo want this to be over.

Back to my hair.  I'd rather buzz it all off when I'm feeling good and able to scale tall buildings in a single bound (well ... relatively speaking) than wait until I'm flattened again.  Just trying to psyche myself into doing this.

I'll let you know ...

:-)