I Don’t Always Have to Say It Myself

Observations from the Kitchen Sink of Life posted on the value and catharsis of storytelling.  I’ve tried to explain this to people, but this post did it so beautifully – explaining for me why I’m here, on WordPress, and at large on the internet.

My favorite parts:

. . . Then there are events that grab you by the shoulders and shake you violently, or even pull the ground away from beneath your feet. The landscape changes rapidly and dramatically, as if by an earthquake. The flow changes course so rapidly and so fundamentally, that it transforms you all the way down to the fiber of your being. When you regain consciousness, when you reconnect with the Earth beneath your feet, you see a vastly different landscape. Familiar in some ways, but different nonetheless. You just buried a parent or close friend, you just heard a devastating diagnosis or somebody you trusted shattered that sacred bond. . . .

Some events shake harder than others.

. . . Some friends, people who have always loved you for your essence, will be able to keep walking with you in your changed landscape. Other friends will evaporate and become echoes, pictures in that scrap book. . . .

I’ve heard this about a cancer diagnosis, and although I’m deliberately holding off on making permanent decisions until at least after the ‘magic year’ is over, I can already see this in play in my life.

. . . Story telling is a powerful way of processing experiences, of transforming karma. . . .

. . . We tell our stories to process, to celebrate, to educate, to discover, to reach out. Because we choose to, because we have to. . .

Yes, that’s why I’m here, on WordPress, because I have to tell my story to survive it.

And the ending paragraph:

. . . Telling your story is a way of saying “this is who I am”, “this is the journey I traveled, this is how I got here”. Naming that journey and the most significant events on that journey opens up space, liberates and is an essential part of processing those events. The most beautiful and powerful gift somebody could give you for telling your story is saying “I see you” (in one of many ways you can say this). But even if you don’t get any feedback, just the mere act of telling your story is  healing.

All of it, but particularly the last line, yes, please, yes.

Read the rest of this great post at The Importance of Telling Your Story.

Copyright Ridingthebcrollercoaster.com 2012 All rights Reserved.

Schedule: Week of October 22-26, 2012

Monday:

7:00am-8:00am Drive from Home to ROnc
8:20am-9:10am CT Simulation for Radiation Therapy, including getting tattoos
9:10am-915am Drive from ROnc to Starbucks to get coffee
9:25am-9:40am Drive from Starbucks to Work
9:40am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by medical appointments]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Tuesday:

8:05am-9:15am Drive from Home to Work [With 1 stop to get gas for the car]
9:15am-1:00pm Work
1:00pm-2:00pm Lunch [Shopping at H&M – got a few good lightweight t-shirts for winter layering & 1 scarf] [Oh, and the first time I’ve taken an hour for lunch maybe since I came back to work after my surgeries on September 10, 2012.]
2:00pm-5:30pm Work
5:30pm-6:50pm Drive from Work to Support Group [Jack in the Box dinner & Starbucks coffee in the car on the way]
7:00pm-8:30pm Attend Support Group
8:30pm-9:10pm Drive from Support Group to Home

Wednesday:

8:25am-9:25am Drive from Home to Work [I actually made a conscious decision this morning to accept being late to work so I could clean up my bedroom (clothes needed putting away, my bag needed to be fully unpacked from my overnight stay at Mom’s last week) – to take some time all for myself to do something I wanted to do, even if I could only steal a few minutes.]
9:00am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by a few minutes of ‘me time’ this morning]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Thursday:

7:10am-8:20am Drive from Home to Physical Therapy [Why can I not get my ass out of the house on time to make it to physical therapy on time?]
8:20am-9:00am Physical Therapy
9:00am-9:20am Drive from Physical Therapy to Work [Driving through Jack in the Box on the way to pick up a Platter for breakfast – OK, I’m aware I’ve now gotten fast food twice already this week, and it’s only midday Thursday.  Apparently, I’m wearing down a bit this week (well, no wonder, see “Dr. Rex Hoffman – Office Visit – October 22, 2012“) and putting healthy food in my face is something that is suffering for it.  Hopefully, I can find some energy somewhere to fix that.]
9:20am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by medical appointments]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Friday:

8:10am-9:15am Drive from Work to Home [With 1 stop @ Starbucks for the weekly coffee treat – don’t tell anybody it’s my third Starbucks this week!]
9:15am-1:30pm Work
1:30pm-2:00pm Lunch [Short – to make up work time stolen by medical appointments]
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Costco
6:30pm-7:15pm Shopping at Costco [Including a 2nd phone call from Dr. Rex Hoffman which, after starting to feel better after posting last night and therefore looking forward to an actually relaxing weekend unlike the last one, ruined this one too, See “Dr. Rex Hoffman – Phone Call – October 26, 2012”]
7:15pm-7:30pm Drive from Costco to Home

Additional Tasks Accomplished This Week:

– walked at least 20 minutes each day
– blogged
– managed to carve out a whole hour for lunch at least one day
– used my hasn’t-happened-in-several-months one-hour lunch to practice some minor retail therapy
– cleaned up the bedroom
– wrote a scathingly honest email to Dr. Raul Mena, Medical Director of Cancer Services at Disney Family Cancer Center at Providence St. Joseph Hospital in Burbank [Hm, after going anonymously under the radar and promising pseudonyms, I’m blatantly and completely naming names all of a sudden – Please See Rule -1 and Rule 0 and “Dr. Rex Hoffman – Office Visit – October 22, 2012“]
– remembered to write & leave a check for our every-other-week housecleaners

I Just Turned On the Air Conditioning … From the Bathroom … With my iPhone

Hehehe.  Okay, so I’m not just a cancer patient, I’m kind of a tech geek too.

[Nest Thermostat]

Dr. Rex Hoffman – Office Visit – October 22, 2012

First things first, I have No qualms at all about the level and quality of medical care Dr. Rex Hoffman of the Disney Family Cancer Center at Providence St. Joseph’s Hospital in Burbank, California provides.

But medical care and patient care are not the same thing.

Also, this is my own personal opinion of my own personal experience including quotations from conversations I, myself, participated in (which, in accordance with California law – were Not recorded, so my quotations are recollections to the best of my ability).

I absolutely allow for the fact that other people may have other experiences with this doctor, and in fact, fervently hope they do!

And now on to my visit with Dr. Rex Hoffman at 8:00am this past Monday October 22, 2012, which has so far (midday Thursday as I begin this blog post and finished it Friday midday) colored my Entire week, as told through my email to the Medical Director for Cancer Services of the same medical facility:

Dr. Mena Attachment A:

What Part of ‘I Work For a Living – Because I Have To’ is Unclear?

Dr. Mena Attachment B:

Dr. Mena Attachment C:

So, after finally finishing writing, and sending, the email to Dr. Mena – I felt better.

It wasn’t just the writing, but the actual sending, that let me release at least some of what I had been holding on to all week.

We’ll see what this weekend feels like and what I decide to do on Monday – show up for treatment (of course it just so happens that Dr. Hoffman will be at a national conference in Boston when I begin my treatment on Monday – and I would not have known this if I hadn’t made a stink this week – but it’s a bit tough to be there to enforce the policy when he’s 3000 miles away – hehehe), or punt and start from scratch to find somewhere else to have the treatment.  I’ll let you know next week.

My New Ink – The Tattoo I Never Wanted

Tomorrow I’m getting at least six tattoos.  I’ve never wanted even one.

This has been all I could think about since Friday night when I got home from work and my mind shifted gears from workweek to weekend.

I have numerous piercings – multiples on each ear, and one in my navel.  I’ve always been okay with piercings because I figured if I ever got tired of them, I could take them out and they’d close up and disappear.  Realistically, I’ve had some of mine for so long now, I could take my jewelry out today and they’d never close up as long as I live.

Still, I could see where a small hole (or even more than one) could easily be overlooked by a casual glance.

Tattoos are something else entirely.  For all intents and purposes, permanent – forever – no changing your mind down the road.

Now, don’t get me wrong.  I am not globally anti-tattoo.  In fact, I find some tattoos, in some places on the body, on some people, very sexy.  I’m talking drop trou in the middle of a busy street at high noon sexy.

So if you’re getting an anti-tattoo vibe here, it is solely about Tattoos and Me, nobody else.  My generally applicable and very strong pro-choice stance extends to tattoos as well.

But I got breast cancer.  And the size and type of my cancer allowed me to choose lumpectomy with radiation therapy instead of forcing me into losing my entire breast (or both of them) by mastectomy.  So next up in my treatment program is radiation therapy, which requires tattoos.

The tattoos are there for a couple of very important reasons.

During therapy, mainly to make sure the therapy is delivered as close to identically each day (five days a week for 6-1/2 weeks, mind you), to simultaneously kill any remaining cancer cells in the area of the former tumor, and to spare as much healthy tissue as possible.

After therapy, they serve both as a roadmap to your prior treatment (should recurrence occur, or you change doctors, for example), and to mark off what I’m calling a future “no-fly zone.”  After some casual internet surfing it seems to me that tissue is really only supposed to undergo radiation therapy once, so even if recurrence happens in the same area, the tattoos mark out the ‘no more radiation here please’ territory.

I have been repeatedly assured that these tattoos will be small –  more (if applied by a women) or less (if applied by a man) the size of the head of a pin, or about 1mm (or so I’ve heard from a casual survey of the unbelievable number of women in my extended sphere of friends and acquaintances who have already fought the fight I’m in now – I Never knew how many people in my life had been through this deal until I entered it myself).

Still – permanent, never wanted one.  Fucking Cancer!

Since they are (theoretically and ideally) very small, I suppose I could actually have them removed, or skin-color tattooed over when my radiation therapy is done.  But anytime I’ve seen this on the net (on reliable websites), it comes with a clear warning to carefully discuss this your MOnc before having them disappeared, for the “after therapy” reasons spelled out above, of course.

So, as of today (Please See Rule # -1), I plan to keep my radiation therapy tattoos.  Goddamn Big Girl Panties!

Having resigned myself to getting and keeping tattoos I’ve never wanted wasn’t doing the trick.  I was still feeling pissed off and unable to wipe this tattoo thing from front and center in my mind.

So, what is a girl to do?  Go get a tattoo.

Wait, what?  Sounds crazy, right?

Well, not in the world according to me.  Here’s how things stand from my POV.  Never wanted a tattoo.  Got cancer.  Cancer treatments require tattoos.  Technically, I have a choice about doing treatment (getting tattoos) or not, I suppose.  Realistically, I don’t have a choice (See “I’ll Take Red Please“).

I do, however, have an actual choice about whether to get a non-cancer-related tattoo or not.  For all intents and purposes, there are really no consequences if I do or don’t (as long as I choose type, size and location wisely).

I could not let go of being pissed fucking off about cancer forcing me to get my first tattoo.  When I “acted as if” the cancer tattoos were Not actually my first one, my mind and heart calmed.

So today I went and got my first tattoo.  Here’s my new ink:

Um, yeah, that’s right.  There’s no picture to show.  I went to a tattoo shop in town that was recommended to me by someone I trust.  I was told to see the owner – Dave.  Unfortunately it appears Dave is on a tattoo hiatus.  I asked my friend if he would trust my body to Molly and he said yes.

It just so happens that on this particular day, there was a once-a-year festival being held on the street directly in front of the tattoo shop.  We made it in there, but the festival crowd was generally not the same demographic as the folks who get tattoos.

Maybe that’s why Molly seemed entirely uninterested in getting me what I wanted, or in the reasons I was doing this.  Maybe she just didn’t care, period.  In any case, I Do realize this is a permanent deal and chose not to do it somewhere and with someone I am not comfortable.

My first thought about this not working out as I had planned was – well, please see Rule # 0.  So I just figured when I got the “on purpose” tattoo (vs. the “they’re required for treatment” tattoos), I’d just warp time and Decide it was my first tattoo.  Hubby said, yeah, I could do that.  I can construct this blog/site world anyway I want to.  It’s all mine.  He also said I could just have the “on purpose” one be the one I wanted, as opposed to the ones I don’t.

We’ll see what I decide to do (or not do).  As of this moment, I have five new tattoos (it just so happens I have a freckle/mole just where one of my tattoos was going to be, so I didn’t have to get that one – who knew?), and this morning was just as hard as I was afraid it was going to be.  Since then, I’ve cycled back to crying about every 20 minutes or so.  And even finding a private corner to let the bawl out isn’t materially helping.

Remember that roller coaster analogy?  Seems to me like today is one of those down days.

SNL (1975-1980, 1985-Present): October 20-21, 2012

Who gets the reference?

This has been a rough one.  As soon as I got home from work on Friday, and mentally left this past workweek behind me, there was only one thing I could see ahead – Monday and the tattoos I’d have to get for my radiation therapy.  I’ve never wanted a tattoo.  Please see “My New Ink – The Tattoo I Never Wanted.”

Saturday:

– coffee
– was interviewed by S (with interview trainee L observing) as part of the Mya Research Project being conducted by UCLA to help tailor future resources to better meet women’s emotional needs in the first year after diagnosis – for those who come after me.
– blogging
– reading
– watching TV
dinner

Sunday:

– coffee
– blogging
– thinking about tattoos
– brunch @ Thelma’s Morning Cafe
– errands [vape store, tattoo shop]
– coffee from Starbucks
– dinner & Sepang, Malaysia Moto2 on tv

Schedule: Week of October 15-19, 2012

Monday:

7:10am-8:15am Drive from Home to Physical Therapy
8:15am-9:05am Physical Therapy
9:10am-9:25am Drive from Physical Therapy to Work
9:25am-1:30pm Work
1:30pm-2:00pm Lunch [Put gas in the car – bought lottery tickets]
2:00pm-5:30pm Work
5:30pm-5:45pm Drive from Work to Acupuncture
5:45pm-6:45pm Acupuncture
6:45pm-7:45pm Drive from Acupuncture to Home

Tuesday:

8:00am-9:00am Drive from Home to Work
9:00am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home [While listening to pre-debate show and debate]

Wednesday:

Woke up at 4:30am – Could not get back to sleep before 6:00am alarm.

8:00am-9:00am Drive from Home to Work
9:00am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:30pm Drive from Work to Home

Thursday:

8:00am-9:25am Drive from Home to Work
9:25am-1:30pm Work
1:30pm-2:00pm Lunch
2:00pm-5:30pm Work
5:30pm-6:40pm Drive from Work to Mom’s

[Slept at Mom’s to save 1-1/2 hrs driving time Friday morning – not my house, not my bed, couldn’t fall asleep ’til almost 11pm (way past my bedtime)]

Friday:

8:35am-8:55am Drive from Mom’s to RSurg
9:00am-9:45am Appt with RSurg who released me to begin radiation treatments on October 29, 2012 [which means I get my very first tattoos (that I never wanted) next Monday October 22, 2012]
9:50am-10:40am Drive from RSurg to Work [with 1 stop for my usual Friday Starbucks treat]
10:40am-2:05pm Work
2:05pm – 2:35pm Lunch
2:35pm-5:30pm Work
5:30pm-6:25pm Drive from Work to Home

Additional Tasks Accomplished This Week:

– walked at least 20 minutes each day
– blogged
– paid bills
– did laundry
– completed AFLAC claim forms

SNL (1975-1980, 1985-Present): October 13-14, 2012

Who gets the reference?

Saturday:

Welcome to my Saturday!   – Your Loss, I’m Awesome on Facebook

– coffee
– blogging
– brunch
– napping
– blogging
– watching tv
– dinner

Sunday:

– coffee
– watching tv
– brunch @ Lazy Dog Cafe & bought “Bark for the CURE” t-shirts for Hubby & me

Now please understand I am Not into the stupid pink ribbon everywhere and on everything, But I thought the way they did this was very cute – and 100% of proceeds go to the Susan G. Komen Foundation, for those who come after me.

– marketing to the tune of $250+!  (It’s been a while since we did more than an emergency run for the basics.)
– napping
– dinner while watching MotoGP Motegi

I’ll Take Red Please

My favorite color is Navy Blue (seen the background color of this blog, for instance?  Guess how I chose my theme.).  I was born in May, so my birthstone is Emerald.  But (other than diamonds, of course) my favorite gemstone is the Sapphire because . . . it is navy blue.

All of a sudden, about 3 months or so ago, I started wanting to wear a lot of red, literally all the time.  I was diagnosed on July 5, 2012 with Breast Cancer.

What does being diagnosed with breast cancer have to do with wearing red?

And why red, as opposed to any other color?

The Chinese culture contains the belief that the color red signifies: good luck, power, strength, long life, vitality, happiness, good fortune, joy, power to ward off evil spirits, energy, determination, vigor, willpower, courage, and triumph, among other things.

Don’t take my word for it.  This information is available all over the internet.  Here are just a few:

Nationsonline.org
Wikipedia.org
WeirdAsiaNews.com
BillionDollarIncome.com

Personally, with what I’m up against, I’ll take all of that stuff I can get.

When I said above that I wanted to wear red all the time, I meant 24 hours a day/7 days a week.  That meant I could put red jewelry a couple of places –

My navel (it was already pierced, so this was just a matter of hitting the nearest mall cart and buying the color I wanted, especially since I never take this completely out, only change them from time to time); and

My thumb – where I could simply look down, see the red and tap into that positive vibe anytime I wanted.

I decided, almost upon diagnosis, that this breast cancer thing was Not going to steamroll me.  Hence, I’ve been making trouble all over town.  🙂  But I digress.

Much of what I have to do to fight cancer is, essentially, out of my control.  Not doing it, or not doing some part of it, or not doing something like it, is simply not an option – not if I want the other 40 years my genes promise me (despite various cancers all over my family, my grandparents and great-grandparents on both sides have lived into their late-eighties and nineties with full mental faculties and most physical faculties – so that’s what I’ve grown up to expect I get too), and the alternative sucks.

To balance that feeling of being out of control, I take control and deliberately make decisions about cancer-related things where doing so does not put myself at medical risk, or is not otherwise unreasonable or stupid.  Notice that someone else’s convenience does not enter into my equation.  I do not visit Any of my medical professionals for their convenience, and I find myself often (politely, when I can) reminding them of that.  One thing I can control is what color gauze is used on me when necessary (which is fairly often given my extreme allergy to tape – yes, even Tegaderm), so I choose red.

I figure I’ll use everything I can to sway this fight in my direction, as long as it does not harm anyone.

The other thing I love about my red self-adherent gauze is I can wear it when I can’t wear any of my red jewelry, or in fact, any jewelry at all – when I have surgery.  And to make damn sure I get my red gauze, and to make it as easy on my caregivers as possible (so I prevent even the possibility of a conflict, since I have the means to do so), I bring my own.  I’ve had two surgeries already, and I may be having more on the other side of my radiation therapy.  So far, everybody’s been perfectly happy to use the gauze I bring, particularly after they ask me why red only, and I tell them.  It’s a win-win situation!  🙂  There are only those few minutes between taking All my jewelry off and having that first IV tied down with my red gauze that I don’t have any red on my body (well, except for my red toenail polish of course! – there’s always a way!), and by the time they do anything really serious, like make me unconscious or cut me open…I know I’m covered.

In fact, I’ve found a few items, in addition to red self-adherent gauze, that have so far made my journey easier.  As soon as I can source and price the components, I plan to offer a “You’ll Get Through This” Pack on a new page: “ToLiveWithByJ”