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 ...

:-)

I'm baaaaaack ....*

In case you're wondering who those two happy females are in the photo ... that's me and Gracie, AKA: Gracie Lou, Gracie the Wonder Dog, Gracie Audrey Hepburn Kenn.  Her first visit to Yosemite! Dave and I were fetching Auntie Deb to bring her back to Menlo Park when she was visiting from New York a mere two weeks ago. That seems like another lifetime ago ... perhaps even another galaxy.


So ... I kept waiting for the other shoe to drop (does anyone know the derivation of that expression? It strikes my chemo brain as very odd right now).  Though the first few days of post-infusion life were not without some weirdness ... they did not go anywhere near the realm of horribleness that my pre-infusion imagination had taken me.  That changed somewhat by Friday, when I awoke with the feeling that I didn't have the strength to move any of my limbs, let alone get out of bed.  This feeling of total depletion continued through the weekend.  It took incredible effort to perform the smallest of tasks - it was amazing how weak and achey I felt.  Like the worst flu I ever had.  The good news?  Except for a few hours on Saturday ... I never felt nausea ... and was able to eat (albeit small amounts) of anything anyone put in front of me ... including a great pot roast and noodles dish that my cuz Barbara made (major yum).  However, that wasn't enough to kick start my strength.  So I laid around like a lump ... alternating between living room sofa and bedroom ... uh ... bed ... feeling truly depressed and more emotional than I had felt for any sustained length of time since this whole saga began back in late May.  I felt like I was constantly on the verge of tears ... and was happy to learn that when I did let the floodgates open it felt pretty good.  And, lo and behold, my tears did NOT burn holes in my tee shirt like acid rain.  I had wondered about that.  I did, however, take that inspired concept for a spin and started composing a song in my head called "Toxic Tears."  Whatdya think?  How about "Chemo Sobbie"  ??  :-)


I can joke about it now because today the toxic haze cleared and I am now sitting up at my computer for the first time in over a week feeling eerily close my normal human self.  I am grateful and relieved. It is really late (almost 1 a.m.) but I feel so good that I wanted to celebrate by creating my next blog entry, which I'm sure you've all been waiting for on the edge of your respective seats.  And though I'm reluctant to return to my bed, I really should try to get some sleep so that I can continue this positive, upward trend.


Don't know if it's chemo brain or just the circumstances of the past few months, but cliched thoughts abound in my head.  I've stopped trying to fight them off because they are so appropriately TRUE ... which is why, I suppose, they have attained cliche-level status to begin with.  The one that is true for me tonight as I sit here in amazement that I can once again move my fingers around this computer keyboard and put words together to make sentences is that sometimes it takes a really horrible event, or day ... or few days to make you realize how wonderful each day is ... even when nothing "wonderful" is happening.  The absence of YUCK is a wonderful thing.  Anything that vaguely resembles normal is a great thing.  I warned you ... cliche ... but I feel like I have EARNED my rights to these cliches, dammit.  I'm not just spewing out Jonathan Living Seagull poop for nothin'.


I really must sleep now.  In closing, let me just say ... YAY.  I feel so much better.  That's something to hold on to for future set backs ... knowing that there is an end to the yuck.


Lest you are curious about just how emotionally deranged I got over the weekend ... here's something I wouldn't admit to you if I were in my right mind.  In the privacy of my bed, when no one was around to witness this new low ... I propped up my Motorola Zoom tablet next to me and figured out how to rent the movie "Arthur"  -- NOT the classic older version with Dudley Moore ... no, no ... the recent remake with Russell Brand. 


I literally sobbed through the last 30 minutes (okay in my defense, academy award winner Helen Mirren gave a hell of a performance as Arthur's dying nanny). If THAT isn't a tragic example of chemo brain, my dear friends, I don't know what is.


G'night and God bless us one and all.

All is well ... relatively speaking

Photo on left:  Me and my sister, Deborah, taken about a few days prior to chemo commencement. She was out here for a quick visit.  I miss her much.

I don't want to jinx this ... but it's now three days post chemo infusion and though I am a bit weak and woozy ... I am able to:  put one foot in front of the other without falling down; eat small portions of food without getting queasy, sit in my backyard and watch my animals frolic, and most of the time speak in full sentences and actually make sense.  Ah ... the simple things that we all take so forgranted.  It sounds so trite, but I will forever more see life through a much different and, hopefully, more enlightened filter.


I was too jittery and fog-brained to do any writing yesterday or wednesday.  Today is somewhat better, though my hands are still shaking. 


I promised a definition of "chemo-brain" and here's one of the best I could find - from the Mayo Clinic:


Signs and symptoms of chemo brain may include:

• Being unusually disorganized
• Confusion
• Difficulty concentrating
• Difficulty finding the right word
• Difficulty learning new skills
• Difficulty multitasking
• Fatigue
• Feeling of mental fogginess
• Short attention span
• Short-term memory problems
• Taking longer than usual to complete routine tasks
• Trouble with verbal memory, such as remembering a conversation
• Trouble with visual memory, such as recalling an image or list of words

Signs and symptoms of cognitive or memory problems vary from person to person and are typically temporary, often subsiding within two years of completion of cancer treatment.


TWO YEARS!  Lord help me and anyone around me if it takes two years to de-fog.  :-)


So, dear friends, be patient with me.  Under the healthiest and best of circumstances I realize that I often exhibit "chemo-brain" tendencies (who knew?!) ... now it's a magnitude of ... well if I could think of the word I'd tell you.  :-)


One thing I do remember and will always remember is the love and support and comfort I continue to receive from all of you, my darling friends and family.  I am extremely grateful.

Finished with the First Infusion and my Nose Has not Yet Fallen Off

Didn't know exactly what to expect ... only the sum of the many sources of information online, in books, via people I know who have had chemotherapy.  Most of it was cause for at least some concern.  So, although I was surprisingly calm going into the Palo Alto Medical Foundation's "Infusion Room" this morning ... I'd be lying if I said that I didn't feel some of that concern.


My first pleasant surprise was that it was a rather cheery room.  Windows and sunshine streaming in. A FAR cry from where I had to take my mom when she was battling her cancer many years ago ... in the bowels of a dingy basement in a hospital in Syracuse, NY.  No windows, drearily appointed waiting room ... as if the situation weren't depressing enough.  I was greeted by a very pleasant, pretty oncologist nurse named Mary she led me over to my side of the room which was about half full of people sitting in comfy looking chairs with IVs in their arms - either sleeping, reading books, playing with their iPhones, or a combination of all three. Hmmmm ... I thought this might not be too bad, afterall.  No one looked too terribly distressed.


My friend Anne traveled over from Half Moon Bay to accompany me on this adventure and she provided needed moral support.  She stayed while they got me set up ... but then understandably excused herself when they began to hunt around for the best vein ... and started the infusion procedure.  After that I was on my own until she came back several hours later - which was a good thing since the "cocktail" of drugs they put in my infusion completely zonked me out.  I slept a good part of the time, which I hadn't planned to do.  In between naps ... I met a lovely woman named Sandra who was there for her second infusion for Breast Cancer.  We had several great chats and exchanged email addresses so we could keep in touch - another surprise!  An unlikely venue to strike up a friendship. Can't say that the 6+ hours just flew by ... the Si-Fi docu-drama.  But, all in all ... it could have been MUCH worse.  The best thing was that I did not have any immediate bad reaction to the infusion drugs, which is one hurdle that I needed to get over and did.


Now that I'm home .... in between evening naps now ... my main "reaction" so far is extreme fatigue and a bit of skin itching.  If that's the extent of my post- infusion side effects, I will be a very happy and grateful chemo patient. My dear friend Jan is going to be staying with me tonight and that is a comfort.


I hope I can write more tomorrow a bit at least ... and explain to you all what the term "chemo brain" means ... because I have already gotten good indication that I have already encountered and will continue to encounter this condition.


Just wanted to let you all know that I survived this day rather well.  Stay tuned and think good thoughts for me ... the worse is yet to come ... or not.


Please feel free to comment on this blog ... and of course stop by or call.


Love  xoxoxox

T Minus 36 Hours

I'm sitting at my desk at home feeling perfectly fine and amazingly normal, thinking about how it's altogether possible that in a few days I will neither feel like sitting up nor writing nor thinking at all.


Up until recently, my only association with the concept of  "chemotherapy" had several degrees of separation that kept me a safe distance from IT.  I have a well practiced tendency to not spend a lot of time thinking yukky thoughts that are disturbing or might put me in jeopardy of feeling more ignorant and helpless than I already feel on an ongoing basis.  The thought of chemotherapy falls right into that category.  I've known, more or less, what it is for many decades now ... but have elected not to bring up the topic at social functions or look it up in the Wikipedia just for kicks.  Therefore, when confronted with the distinct possibility that I would be undergoing such a course of treatment ... I felt like I was entering The Twilight Zone.  That was several weeks ago, after my surgery in early June that removed what was left of my cancerous uterus and my, thankfully, non-cancerous ovaries, Fallopian tubes, and other "female bits" that it turns out I never had any use for EVER in my life.  (Hence the other choice of blog title, "My Useless Uterus" ... I like the alliteration, too.)


Anyway ... I'll spare the details now (they may unfold as this blog moves forward in a cinematic "flashback" motif perhaps).  Suffice it to say that I had several delectable choices of "adjuvant" therapies after my surgery.  If you're not familiar with the term "adjuvant" ... not to worry.  Neither was I.  Never had that word ever surfaced around me or in front of me in all of my many years.  Chemotherapy, yes.  Adjuvant, no.  Well it seems that if you have surgery for endometrial (Uterine) cancer - EVEN IF you're told that they got it all out - in some cases (like mine) "they" (western medicine, non-alternative thinking oncologists) suggest to varying degrees that you follow up with a little chemo (and perhaps radiation as a chaser) just to raise the odds - albeit even just a few percentage points - that the cancer will not come back.  And since I REALLY liked the sound of that phrase: "the cancer will NOT come back"  ... I opted for the chemo (and perhaps some localized radiation - though not totally sure about that part yet), despite the feeling that I would soon be entering the Twilight Zone.  I mean ... come on ... I've encountered enough absurdity in my 50-something years to last several more lifetimes.  How bad could this 9-week stretch of chemo brain possibly be?


Well - I'm going to find out.  And I'm going to share it with you.  Oh lucky day!  This is my plan to get me through this Twilight Zone-ish experience.  If I can at all write about it ... I'm hoping it will make the days go quicker and this adventure seem less extreme.  That's the plan.  I'm going to try to keep my tongue planted firmly in my cheek as much as possible ... don't want this to get too serious.  Of course, I'm sure it will have it's moments of gravity.  But I'm hoping I can share with you the "lighter side of dealing with a bout of cancer" ... that's right - just like a "bout of the flu."  If I keep telling myself that's all there is to it, perhaps I'll be able to believe it one of these days soon.


Thanks for stopping by.  Hope to hear from you, dear reader.

C Minus 11 hours ...

C is for the dreaded CHEMO  ...  an adventure I begin in 11 hours.  Hoping that I will be able to write during the five to six hours that I'll be tethered to an IV that will be infusing my blood with the potion that is going to rid my body of all microscopic remnants of the cancer that was found in my useless uterus - which was yanked out on June 3.  It was my least favorite body part ... so I'm happy to be rid of it ... and, of course, the cancer that was eating away at endometrial wall of said body part.


This is going to be another one of those "character building" experiences.  I'm feeling surprisingly calm tonight ... hoping I can get some sleep so that I'm strong enough to kick some cancer ass tomorrow.


Thank God for Ativan and for my wonderful circle of friends.  Both do wonders for keeping my anxiety level from going off the charts.