Baby's on Fire....

OK I am not even gonna mess around on this one. Times is bad my friends.
The lyrics that have been running around my head like a crazy hamster on a wheel for the last 4 days, brought to you by the lovely Brian Eno:

"Baby's on fire, better throw her in the water
She said she was hot stuff, and that's what baby's been reduced to...

Radiation has kicked in full force and it REALLY SUCKS.
I basically feel like I have a bladder infection 24/7...so instead of feeling like I am on fire when I am peeing I feel like that ALL...THE...TIME.
Can't sleep...I'm jumping up to go to the bathroom every 15 minutes. Not hungry...afraid to eat anything even slightly spicy because it makes the fire that much more intolerable..can't focus, can't sit down, can't stand up. Can't...stand...feeling...this ...way!!!!!!!!

It was so bad on Monday that they would not give me my radiation treatment..which of course pushed back my "Thursday-I'm-finally-done-with-chunk-one" happy day.

And the Dr. I saw at the hospital who wouldn't let me get the treatment (My regular radiation doc is on vacay) pissed me off royally because he told me in no uncertain terms that my surgeon would NOT want me having my last three "boost" treatments (Boost is where they aim a more concentrated ray at the tumor itself) because quote..unquote..."She thinks that they make it harder for you to heal".
I said "Does it make it harder for you to heal?"...then he said "Well, she thinks so" So I was banned from radiation Monday and told to return Tuesday am at 9 to talk to him after he touched base with my surgeon...

Onto, 10 AM Tuesday morning...I've set at the hospital for an hour...haven't seen the Dr., haven't had my treatment (because I'm not allowed to without talking to him first)and I was REALLY starting to get mad...and scared.

Don't know if you realize, but once they radiate you in an area of your body, they can never radiate there again. It's a one shot deal. And now I was starting to get REALLY MAD that I was going to lose these last three treatments because the surgeon "thinks it's a bad idea" and why the hell didn't I hear about this like 5 WEEKS AGO??? Would I spend the rest of my life worrying that my cancer could come back because I missed an opportunity that could never come again?
And on top of everything else... I had to go to the bathroom AGAIN. I was definitely not having a good day.

So finally I went back to the nurse's desk and asked what was going on..."Oh The Dr. doesn't need to see you today."...what?? (well then why the hell didn't he call and tell me that??) "But I can't get my treatment without his OK.."..so they called him and what did he say? "Oh it's fine the surgeon totally thinks she should have the boost."

Crap. All that worry and freak out for nothing, Dr's need to do a better job realizing that every single word out of their mouths has the potential to make a huge emotional impact, every time they open their mouths... and a day added to my chunk one schedule. (and in the back of my mind I am thinking..crap, asshole, shithead...)

BUT. I am almost done with radiation. 3...days...to...go.
Yeah, You could say I'm all kinds of "fired up".

The Sweetest Thing...

Way, way back in the day I remember distinctly saying "I would never work at a large impersonal corporate job!!!" This was due to the fact that my Dad had a similar job and I missed him because he had to travel all the time. Plus it just didn't jive with me playing rock n roll out on the road...

Well a perfect case my friends for never saying never.

After I got off of my 10 year stint on the road as a musician I worked for a short time at an Ad Agency...this was technically my first "Real Job" ever...from a creative standpoint it wasn't bad and I got to do some truly amazing stuff like do interactive kiosks and do the very first interactive program for P&G. After I left due to the fact they much preferred folks with the single lifestyle, who could basically work around the clock (What do you mean you have to leave at 5:30 to pick up your daughter?) I left to do freelance work and worked quite a bit for P&G. There I worked for a Director named Robin Jowaisis. He knew why I had left the ad agency and he really liked the work I was doing for P&G.

So then the question started..."Hey Beth why don't you apply at P&G?" Well seriously the first time he asked me (and every subsequent time really...) I just fell out laughing. Me? Miss RocknRoller? Miss "I have purple hair and carry a lunchbox for a purse"? Me Miss "Death to Corporations" Work for "The Man"?...NO WAY...Ha Ha Ha!!! "Oh no thank you" I would tell Robin...pretty much daily...this man would not let up...the more I thought about it the funnier it seemed. This is when "proctoids" the not-so-very-nice term for P&G folks was still around and very true. Automatons in suits who looked alike, dressed alike and thought alike...

I could not picture myself there NO WAY, NO HOW.

So after about the 56th time he asked me when I was applying (I am not exaggerating on that one)I did it. Yep I did it, just to shut him up.

And OH MY GOD they offered me a job...

Now what?? Well I rationalized, I could use the benefits and I could just do it for a year to have something awesome on my resume...and so I told myself I would do it...for a year, and if at any moment I was bored or didn't like it I could leave.
And it was so weird I honestly thought it was some kind of mistake that they hired me...as much as I couldn't picture myself there...my intuition told me to take it.

And I did it...I accepted the job. And this year was my 12th anniversary there.
Yes my friends hard to believe. 12 years later.

And here's what I learned....I actually had something to offer..my experience my marketing and IT savvy and I honestly felt the longer I was there I also had a spiritual mission to help the company move forward from automatons to being able to accept working with folks like me. A lot of things have changed in the last 12 years...no suits, cell phones, working from home, testing and using new tools...I worked to be at the front of it all and now P&G is a very different place...and hopefully a little bit because of me. :-)

It's been an amazing experience, I learned to be a good project manager, a good manager, I learned to trust my rock and roll intuition, I learned how to develop applications, I got to network with some of the smartest minds in the world and meet some incredible people...

Now flash forward to today or more accurately a week ago...it was time for our section meeting and I was looking forward to it...because I hadn't seen my team since I had to break my bad news and I missed them and I also wanted to let them know I was really doing OK.

Now at P&G it's such a big company it's a lot like life itself...you have good situations and not-so-good. This time around I have been blessed with a FABULOUS team of folks I work with..the BEST hands down since I started at the company. these are folks I not only enjoy working with, but without exception would truly enjoy hanging out with them outside of work. They are all brilliant and funny and just "Good People".

They (to my surprise!) didn't bat an eyelash to my "Team Fuck off' arrangement..in fact they embraced it whole heartedly as "TFO - P&G Contingent" and at least once a week I get something from them just to cheer me up...I got my awesome hair hat with changeable colors of hair I can velcro in and out at will , funny cartoons you name it...always made me laugh...

But the biggest surprise..the sweetest thing was at our section meeting out came the tee shirts!!!

"TFO P&G Contingent - Kicking butt cancer's ass!"

Ha Ha!! My anarchy is complete...!!
Except for one thing...they handed me a package and in it was an iPad...an iPad...an IPAD!!!!!!!!!!!!!!!!!!!!!!!!

I then did the appropriate business response and burst into tears.

They said "we know things might get worse before they get better...so now you have something to stay in touch and keep occupied"

I have never had something touch me like that did.

So right now this update is for my uber supportive wonderful friends and coworkers at P&G, Sam, Delaine, Gina, Pete, Sharon, Curt, Jim, Terry and Joe and guess what guys? I am doing it on my iPad...from the bathroom!!
(Naw, not really just kidding about being in the bathroom :-))

Proctoids? What Proctoids?

Glad I followed my intuition...

Behind...

BUSY! I've been busy!

Oh I know that's not a decent excuse but, on the upside it means I have felt good enough to be busy.
I've had an amazing two weeks...my friend Cynthia was visiting from Michigan, where she was exiled a year or so ago to the UP...or Upper Peninsula as it's more widely know, a vast punishment for my beautiful musical pop culture friend.

She and I managed to do some fun things and she helped me out immeasurably getting the house in order and cooking some fabulous Mexican food...she also got a copy of the "Nutritional Healing Book" for me so I'm prepared when the radiation and chemo have ended and I need to get in tip top shape for surgery.

I managed to play Taste of Cincinnati and the gig went beautifully, save the insane heat during the day and me managing to lose the entire band as I tried to navigate the one way streets and street closures. But we made it on time and the hundreds of folks who came out to see us made it all worth while.

So, now's the time when the shit starts to "hit the fan" so to speak...last Monday was an "exercise in insane diarrhea"...really there is no other way to put it. On Tuesday when I saw the Oncologist I told him things weren't out of control but the urgency factor was getting worse. So he said "Well I think it's time to start the Imodium" so I grabbed some on the way home, thinking I was home free, but I was Oh SO WRONG!! All hell broke loose...all hell from my butt to be precise, having been only hitting the restroom 3 maybe 4 times a day so far imagine my surprise on Tuesday when I lost count at 25...yep that's right I said upwards of 25...I didn't think a person could go that much EVER. And it blew. And it hurt. And it SUCKED!!!

So Tuesday morning the call went out..."I need something else PLEASE...Imodium and I, we don't get along!" So I ended up getting a prescription for Immodil and happy to report it did the trick. The big D is now under control and no big deal.
Tuesday is not a day I care to repeat EVER!!.

However it was a sad reminder that all this stuff is supposed to get worse before it gets better.

So today It's been 4 weeks and 2 days of Chemo/radiation and I am still rocking it.

The tiredness has gotten worse but thanks to the Imomdil, nothing else has.(Take THAT diarrhea!!!) :-)

So how tired you ask?...well I am still going to radiation every morning and working and then I have the strength to do "one thing" like make breakfast and do the dishes...or drive Emma somewhere or get lunch. Pick one. Then it's nap time.
Then when I get up and it's the same thing, one thing and only one. So I have just accepted that's the way it's going to be for the next few weeks.
Chemo and radiation are over next Wednesday! (Yay!!) but then everything culminates a week or so after so...bring it on "c'...I'm ready to kick these last few days of chunk one out the door!! And shrink you out of my life forever!

Also I had the interesting experience of actually staying home this weekend. Wow...way weird!! The TFO'er's were right there with me when we stayed in Saturday night and watched Eurotrip...And you know what? It was one of the best nights I had in a long time. I had all the folks I'd go out to see with me, without the loudness and crazy people antics you would encounter on any given Saturday being out and about.

So we're coming into the home stretch of chunk one....and I'm still rocking.

Quick Update and damn the naysayers...and love the searchers.

Just so you all know...tomorrow I will have completed two weeks of Radiation and Chemo. And again so far, so good. :-)

Tiredness is getting a little more of an issue...by 2 PM I need a quick nap and my rock-n-roller lifestyle is pushed aside for a moment because I am actually tired and in bed around midnight (weird huh? so this is how most of the world lives!...)
However on the other hand I've slept more in the last two weeks than I have the last 3 years so in some ways I feel marvelous!! Even my skin feels better!

But NO nausea (YAY!!!!)
Just a tiny bit of diarrhea...but no other symptoms AT ALL. :-)

In fact the other day I was a few minutes late for Radiation, due to the lovely and unpredictable roadwork that's going on around the city that seems to change location daily...and so when I got to Christ Hospital I was hustling into the room because I didn't want to keep anybody waiting...Sean my radiologist was trailing behind me and said "Well looks like some body's got a lot of energy today!" To which I replied "Well heck yeah I feel great!!" to which Sean's reply was..."well you know you're not always going to feel good right?"

I paused for a second and my new "live in the moment self" said "Well yeah, but today I feel GREAT!"

But in my head, my old Beth self said "SHUT UP Sean!!!!
So there.

On the interesting news front, I saw a fabulous TED talk entitled "Can we eat to starve cancer?"
Click here to see the video

If you're not familiar with the TED Talks you should get to know them, they are FABULOUS!! Just search them out on YouTube...some of the world's greatest mind's discussing everything from physics, to science to creativity and beyond in a fascinating easy to understand, "Let's push this world forward kind of way!"

Just edited to give you the link, cick here, to the whole catalogue of TED talks. Seriously you should do yourself a favor and watch one daily!

Now go make yourself some spaghetti...

Miss Independent

OK just to be clear upfront..a very sucky Kelly Clarkson song, BUT a very good title to what Ive been examining lately...

Independence. From the moment we're born that's what we're encouraged and long to do, to be...

We're encouraged to walk. to eat, to drive, to live on our own and to be independent enough to make decisions to further our education and join our lives with other people. And most of these things are celebrated as milestones...Look baby's first steps! Look She just got her license!! Graduation, and on and on...

We spend our whole lives learning and yearning to stand on our own feet (literally) and embellish and learn from our mistakes and education to become a functioning independent contributor to society.

So what's that got to do with cancer...oh dependence here I come!

The other night Kevin and I went to Kroger's for the very fun task of outfitting my house for cancer. Which means I got to spend a whole lot of money on things like Gatorade, heavy duty antibacterial cleaner and sanitizing wipes, and hand sanitizer...I spent like $200 and didn't even get any food...
And there was this one item on the list...sounds silly right now as I write about it, but it gave me pause...a long pause...Johnson's Baby Shampoo
I haven't used Johnson's baby shampoo since Emma was a baby...and before that?
When I was a baby. But even though they predict I probably won't be losing my hair, you are strongly cautioned to use a very gentle shampoo in the meantime...BABY SHAMPOO. Kevin and I had gotten everything on my list except that, and I mumbled something like "oops forgot something, you just hang here and I'll be right back" because I didn't want him to see me buying BABY SHAMPOO.

And that evening or shortly thereafter I was out and I was confessing I don't have much of an appetite and my friends were wholeheartedly agreeing I need to have a bunch of Ensure around in case I'm not getting enough nutrients. Ensure. It's like baby formula for old people...

This is a way harder pill for me to swallow than chemo.
I don't want to be a baby (although I may be whining like one at the moment lol)I don't want to be helpless. I don't want people to have to take care of me...I don't want to lose MY INDEPENDENCE.

I've worked my entire life so no man, not my parents, Emma, NO ONE needs to take care of me.

And not just me..I have some very good friends wrestling with similar questions of their own...do I go away to college? Or stay somewhere familiar? Do I get the operation that may leave me less mobile than I am now or keep looking to find a better way? How can I continue to function when I can't leave my house?
These questions raise heart rending questions and feelings because it's all centered on losing our independence. Whether it's temporary or not.

Losing your independence , at least in America, is often seen as "becoming a burden" or "not being capable" or competent or mature or...hell the list goes on and on.

I worked too hard to end up dependent.

BUT. One of the things I love to do most is help my friends..whether it's a drink when I know they are short of cash, a meal, a shoulder, a ride, a word of advice or hooking them up to a person or product that would make their lives easier or helps in the nick of time...seriously one of my favorite things, a direct result of my glorious independence that I can do that. Makes me feel GOOD.

So after some heavy duty examination here's what I arrived at:

The words Give-and-Take appear together frequently don't they?
And someone helping you doesn't mean you are help-less.
And am I denying someone else the pleasure they would get (just like I do) from helping me if I continue to be nothing but Miss Independent?

I just realized for the past 20 years I've only been living on one side of the equation...

I "Ensure" you. it won't happen again.

Knock, Knock, Knock...on Wood.

Day 4...already.

Tomorrow I will have lived through my first week of Radiation and Chemo. (Yay me!!)
Here's hoping the rest goes as well and as fast as this week did.
I'm tired, really tired, but is that the chemo? Or am I just tired from being insanely busy for the last 15 years of my life??
No nausea or diarrhea or any of the other icky possibilities so far...knock wood.

Still having emotional ups and downs, but overall I am just realizing and OK with the fact that this is reality, and I just have to deal with it and do what I need to do.

Life is not without it's strangeness however...
I now have to live my life in "chunks". (As in "right now we're in Chunk 1 on day 4")
My day is dictated by my being at my radiation appt exactly on time and figuring out exactly when I have to eat so I can take my pills "exactly 30 minutes later". There is no lee-way in this. My life depends on it.

Although I have many meetings and appts in my life normally (juggling work, band and daughter is a feat unto itself...)...I am not what you would call a person with a routine. In fact I am the "chronically 5 minutes late" person...I've been that way all of my life. I never liked routines...and this week just bolstered that feeling . Routines make me feel tied down and stifled...where is the joy? Where is the spontaneity?

Routines mean I can't take off for Rio or Paris at the drop of a hat, or lose myself in painting or writing a song without limiting the creativity...not that I would actually DO that regularly (although I have in the past pre-P&G), but it's beautiful to know you could if you wanted to. And right now I can't...probably for a while.

So now the challenge is how to be creative and spontaneous in the tiny moment or "in a schedule" if you will...big challenge. But I am up for it.

On Facebook during the month of April I gave my self the challenge of writing a haiku a day for National poetry month...and it was a challenge! Some days were easy, some were frustrating and made me want to scream, some days I drew a blank, but then turned around and made that into the haiku. My favorite? The one I made for Easter: "Oh bunny, bunny. Chocolate ears are beautiful...you can't hear me now" - Still laughing over that one... Only a certain amount of syllables allowed to get across a thought or feeling...But hey I did it. And I realized sometimes constriction makes you be more brief , more meaningful, more in the moment. And it's just as deep. And I think I just realized that although spontaneity is great...sometimes it can be running away from what beauty that is right where you are right now.

And I intend to find it...knock wood.

And in the Beggining...

Well it arrived. D-Day if you will. ("D" standing for determination of course...)

Time to get the show on the road...do it. Kick this thing. Rock n roll.

And I had my first bit of good news. I qualified for a clinical trial to see if combining certain time tested drugs and combos thereof, could be more effective and contribute to a greater longevity and make the radiation more effective if used BEFORE surgery. And my friends I lucked out...instead of having to get a "port" (an IV they implant under your skin that you can hook a medicine bag to) and having chemo delivered via the port 24/7 5 days a week I was randomized (picked by random by a computer) into the PILL group.

That's right ladies and gentleman. My chemo is a pill..well 3 of them (not horse pills thank goodness) that I take twice a day...no needles..nothing A Pill.
How wonderful is science really?!? Pretty damn wonderful from my point of view at the moment. This means I also only have to go to the Dr. once a week. And can keep on a pretty regular schedule with the addition of 10 minutes of radiation a day.

So how did it go? GREAT!
I realize the effects may be cumulative and all, but Day 1? Piece O' Cake. (and please remind me of my carefree attitude when we arrive at day 23...mmm K?) But seriously with the exception of a little nasal "burny" feeling I feel just great. A tiny touch tired...but I did have to go to the grocery store and that always wears me out...so so far so GOOD!

Also I found out that the radiation I'm getting is State of the art...it actually 3-D images the tumor and lymph nodes and only treats that tissue. It's only been around for a year and I'm lucky to get to do that. 10 minutes and I am out of there...

The only bummer was waiting at the Dr's after I got there at 10 am...felling good, feeling positive and then waiting 3 hours!!!!! Fighting nervousnes is a little hard on the body and soul And I'll tell you people with cancer don't hold anything back...folks were pissed and rightfully so, it wasn't pretty.

But I made it through...and now am officially on day two. And still feeling pretty good. A touch tired perhaps but it's raining outside....who isn't longing for a nap right now...right?