Two Weeks In

“We’re ya been, Scorchy?”

I saw that subject line in my Inbox and realized that I have not been writing.  And there’s a reason:  I’M WORKING AGAIN!

I’M WORKING AGAIN!  Ah, what a wonderful thing.  This tumor flare/spondylosis crisis that started in October was some wild ride.  And coming back for what was my first five-day work week in months (possibly since October) was a profoundly eye opening experience in many ways.  It was also a lot to process.

I’ve had a few fits and starts on my return to the office.  I’d think I was back, only to have to take two days off.  Then I was back again!  And off again.  I finally got back and felt pretty darn great.  My energy level had returned to what it was before and I started to delve into projects and day-to-day management.  It didn’t take long before my plate was once again full, HR issues appeared, and the usual weirdness of any workplace started to settle in–kind of inevitable when so many people work together.  Not to mention a hive of detail freaks (that’s how we roll).

But I had a new perspective.  I had been through my own personal hell for some months.  After all, it was only seven months ago that I learned that the Death Star set up its stage ii boob orbit.  Just when my consciousness accepted the concept of chemotherapy I learned I had stage iv disease–out with the Death Star and in with the Doomsday Machine.  And just when I happily settled into a partnership with my new oncologist, I had the effing tumor flare thanks to Tamoxifen and that led to a severe manifestation of spondylosis.  When I went through those months of back pain I started to think to myself  “Is this what it’s going to be?  Am I going to feel like this until I kick the bucket?  Bad enough I drew the short straw, now I have splinters?”

I kept pushing through, but I was afraid all of that would too soon become the norm.  Before the wonderful anesthesiologist at Mount Sinai’s Pain Management Division turned that hell around it was really hard.  My friends were there to help me all along the way and although relief didn’t come right away, in due course I was feeling well enough to return to about 80% of what I did before.  For me it’s miraculous and I am grateful for the expertise that helped me get here.

For months I was kept behind a door that locked me into a situation over which I had no say.  And for a control freak used to choosing her own way it was sometimes torture.  When I finally got back and into the swing I was back in control again–but not all the way.  Somehow acknowledging that I had about 50% of control over my life while cancer/spondylosis had the other 50% was something I decided I could tolerate.  Because as for my 50% I was going to make the most of it.

I rediscovered my bliss in the work that I do.  I never took the time to research client reference questions because I was always too busy with something else.  No longer.  Now I make the time.  And my reward?  Combing through a minute book from 1752, reading a Boston newspaper from 1766, and finding a handwritten letter from Jack Kennedy mulling some possible titles for Profiles in Courage (Courage in the Senate anyone?).  I can’t control cancer, but I can control what I do that makes me happy every day and my love for history is it!

Capture

I reorganized my sphere of responsibility to delegate administrative tasks now made easier by a newly installed circulation system.  I read job descriptions, examined workflows, and sought input from others.  What emerged was a workflow and hierarchy that better empowered staff and more pointedly exploited our strengths and personal predilections.  Gosh, why hadn’t I thought of any of this before?

There are challenges, of course.  All of this medication (and no narcotics) makes it a tremendous chore to move in the morning.  The alarm goes off and two additional alarms and cat nudges later I still need to sit still for an hour with a cup of tea before I can truly move.  My boss has been good and allows me to come in at 10:00 and I work through 6:00.  It was either that or go to bed at 6:00 pm and start setting alarms at 4:00 am.  I never experienced this before, but then again I’ve never taken this many meds before either.

And speaking of meds.  While I was on my paincation I was pretty well medicated–especially in December and most of January.  I had read about some of the negative cognitive functions that came with Tamoxifen.  I thought I got off pretty easy.  I didn’t experience any problems.  Though now that I am back in the world of the productive, I’m seeing them up front and personal–and it’s scary.   Clearly living the life of a barnacle those months didn’t reveal the patterns.  First of all, I have a constant difficulty when I try to find the right word to describe something.  Sure, we all have done that–but this felt different.  Weird.  When I am alone I can give myself a moment to think of it.  But when speaking with colleagues or clients?  It’s embarrassing.  Second, there’s the inability, sometimes, to move seamlessly from one thought to another.  One moment I realize I need a particular file, and in the second it takes me to turn and open the file drawer I don’t recall what it was I was doing.  And, third, the littlest thing can disorient me and send me into a personal vortex of uncomfortable uncertainty.  Like when my friend Tam came to visit me at the office.

My cell rang and “Unknown from Bronx, NY” was calling.  I don’t know anyone from the Bronx, but I answered anyway with some skepticism.

Me: Hello.
Tam: Scorchy, this is Tammy.  I’m here in [the building where I work].
Me: Wait, who is this?
Tam: Me. Tammy!
Me: But . . . I . . . who?  [Silence.]
Tam: Scorch, it’s me Tammy.  You know, friends with [and she mentions our mutual friends].
Me: Oh, Tam!  Tam!!

Disoriented by not knowing anyone from the Bronx named Tammy, my brain could not pop out of that rut to process that Tammy was, in fact, Tam.  I couldn’t remove myself from what was identified on my phone as the Bronx to my friend who lives in Brooklyn.  It was the strangest moment I have ever experienced.  There was a realization of panic when I couldn’t make the shift that further kept me spinning in circles.  Cripes.  Well, at least if I live long enough to have Alzheimer’s people will be used to it and I won’t even know that things have changed.  Tamoxifen is, indeed, a fickle bitch.  I guess it didn’t like my letter.

What Tamoxifen or, for that matter, cancer cannot do is change what I love so much about my work.  Fuck ’em, I’m going to squeeze everything I can out of this tube of toothpaste we call life.  And I’ll do it doing what I love.

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20 Responses to Two Weeks In

  1. Katie says:

    Don’t you go on any prolonged absences like that. Also, I’m stealing that toothpaste metaphor forever.

  2. dear scorchy,

    YOU GO, GIRL! i am thrilled at the lilt i hear in your voice as you speak about loving what you do, the sturdy thread of gratitude that you weave through the process of moving forward, for how far you have come since october, and the affirmation there ain’t nuthin’ gonna rain on your parade. chemobrain totally sucks,, and often makes abolutely no sense at all; hugh and i were having a conversation and i was trying deperately to think of the word, “viking”, sputtering in frustration and shooting off expletives – when i was suddenly able to say, “…you know – fierce norse fighters!”. how is it one can think of THREE descriptive words like that just to get to ONE lousy one. but now, we never say “viking” – ends up fierce norse fighter is lots more fun to say!

    xoxo,

    karen, TC

    • Scorchy says:

      Thanks for the kind words. I know–when I’m searching for that one word I can hand you a definition out of Webster’s, but the word get lost. “fierce Norse fighters.” +chuckle+

  3. Welcome back. Now get to work.

  4. jbaird says:

    I received my Doomsday Machine news last November. Your post gives me so much hope. If you are at 80% of what you were doing before, I would say that is very good. I’m so glad you are back to work and happy. That just warms my heart and tells me perhaps I can do more than I currently do. xo

  5. I’m so glad you are doing so well and enjoying life outside of the house! Yay! Yay! I have word finding difficulties at times, too. I’m sure my hormone blockers (tamoxifen and lupron) don’t help, especially since the resulting hot flashes disrupt my sleep. However, I also think the stress of juggling so many balls in air has an impact on cognition, too, especially since at least one or two of the balls I juggle is ON FIRE! So I tell myself that if I keep working on my stress management, things will improve. And they do, in fits and starts, between surgeries and teen-sasters involving my kid. But enough of my psychobabble and back to the main message. I am so thrilled for you!

  6. dglassme says:

    I’ve experienced many odd cognitive moments since being on chemo but, the biggest issue seems to be how many damn things I now spill, as though I no longer have eye-hand-head coordination to keep things balanced. Example: the ability to keep utensils level as I approach my mouth or the ability to sense stuff falling out of my mouth. This cognitive relationship is all too often no longer there, something is waaaay different!!! I’ve had more sh!t on my shirts then when I was a baby. And when I do dishes or fill a coffee machine reservoir inevitably there is going to be some sort of spillage, never before like this. My hands are not shaky just seem to lack the motor skills. A gift of a bib would probably be more appropriate than a scarf to cover my naked head.

    • Scorchy says:

      HA! I suppose this is why it is so hard for scientists to objectively report on this. It’s even hard to subjectively articulate the experience without speaking in vague terms. I’ve always spilled crap on my shirts, but this weird disjunction and inability to shift seamlessly and “think on the fly” is very disturbing. Crikey!

  7. Victoria says:

    What a wonderful post. I’m due for my first scan (post first round of treatment) in less than a month. I think often of how I will react if I get the Doomsday Machine. I’ll know the week of April 8.

    I wasn’t working before my diagnosis (I had left my job and was on unemployment) and I don’t think I’m up right now for restarting the job search. However, I do advocacy work through my and another blog. A few weeks ago I slowed down a lot thinking “what’s the use because I probably won’t be around” and “what can our opponents do to me anyway – come over here and waterboard me in the hospice?” Really depressing dark thoughts. Not sure what turned it around but lately I started doing research again and writing emails and organizing a delegation to an EU forum. Felt good. Felt right.

    Maybe the trick with emotional states is to treat it like the weather. OK, I got up this morning and it was raining. Can’t do a damn thing about it – totally beyond our control. But it isn’t going to rain forever, right? The sun has to come out sometime, right? The answer to the question “oh God am I always going to feel this bad?” is probably not. So riding it out is probably the way to go. On the other hand it makes me so angry when I feel this way because it feels like such a goddamned waste of whatever time I do have.

    • Scorchy says:

      I hear you. But wasted time or no, it’s part of out human experience to some degree. I’m actually working on a post about this right now! More to come. Keep us updated with the scan, Victoria. I will anxious to hear! xoxo

  8. So very happy for you Scorchy! Woo Hoo! Keep taking baby steps and be kind to yourself! 10 years after chemo etc and I still have moments where someone has to ‘translate’ what I’m saying ~ lucky for me, kids/hubby are used to me now. It’s new people who sometimes look at me funny, but I just smile. Who cares what they think? I’m here, I’m me and like you, we’ve survived! Big hugs! xo

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