Friday, April 15, 2016


Yesterday, I sat in my therapist's office, someone I just began to see over these past couple of months, and I realized something. I miss writing.

I was telling her about this great blogging adventure and how it changed my life. Completely, totally and unexpectedly, it changed the direction of my life. I became, in the words of George Eliot, the person I might have been when indeed, I did think it was too late. I'm sure I wrote about that. I remember mentioning an eye roll I gave my daughter when she suggested I Nike my life. Those things make for great quotes. They aren't the actions of people with real world responsibilities like caring for a family. Plus, George Eliot was actually Mary Ann Evans and I suppose circa early 1800's, women didn't know what they were talking about. Thus, Mary Ann became George, turned out some pretty impressive quotes and I Nike'd it.

And the therapist? I love her. I have come to realize I am living with cPTSD. I'm sure I mentioned this somewhere, too. Have I mentioned recently that my brain isn't what it once was. And have I EVER mentioned that my beloved grandmothers lived to the ages of 87 and 94 and each of them was sharp as a tack. Mom's mom, who lived to 87, was more genteel and very wise. Dad's mom was 94 pulled no punches and was also very wise. At 94, she had quite an arsenal of phrases. The best ones are not suitable for print. Seriously. Not suitable. Dad's mom's mom died one month shy of her 100 birthday. She too, was sharp as a tack.

Despite living in this country for more 80-ish years, she never learned to speak English. She was a widow at 30-ish (possibly 29?), pregnant with her youngest child, her SIXTH child, when my great grandfather was killed in a construction accident in NYC. I have the paperwork, his death certificate, her name on the ship manifest but please, I can't distract myself with minutiae to get the exact numbers at the moment. Her children always served as the interpreters. Over the last fifteen years (or more) of her life, an investigator from Royal Globe insurance would show up at her door at random times. I suppose someone would pick up a file and see how long this worker's comp claim was open and think, "NO Way."

And the bell would ring. "Oh, you're still alive?" She would barely crack open the door. In her bit of broken English, she would acknowledge that, yes, she was still very much alive. Very much well, except for arthritis which limited her mobility and very much irritated at these unnecessary interruptions to her routine which, for whatever its worth, included a daily glass of red wine, sipped from a coffee cup. "Yes, God Bless Me," was her barely audible response. And what was not visible? The hand gesture. The horn, to be specific. Shout out to CNN for a great video and accompanying article with drawings and some impressive and accurate descriptions. Most Italian Americans know this. You either sit on your hands or your hands are an integral part of the story. In the case of my mamma nona, the horn was to ward off bad luck brought by the idiot at the door, and a derogatory gesture directed at said idiot. I suspect the latter was the more important of the two in her mind. It's the mindset of my family. It's ingrained in me. I have no patience for this kind of stupidity. It's been handed down through the generations.

Aside from my mom, these are the women I look to when I'm in a quandary. I mix all four together and come up with my own appropriate response. Sometimes, it's genteel but if I am to be completely honest, as I've gotten older, I'm more like my father's mom. For that matter, my mom is too. The words fly. They can, no, they DO get quite colorful and yes, downright raunchy. And sometimes, those are the only words that will suffice. Yesterday, as a word flew off my tongue in the therapist's office, she stopped me to tell me that she loved the word. It was perfection. It was the only way to describe what I had just shared with her. That was her opinion about my word choice....perfection and stuff.  Curious? Not today. I'll share at an appropriate time. Despite the zen attitude and her well of wisdom, she's now been added to the mixture of women I look to when I'm seeking direction.

What is cPTSD, which is, after all, the only reason Zen-Wise Sally is now part of my life? It's complex Post Traumatic Stress. It's the accumulation of events rather than that one seismic boom. The accumulation of events over a period of time that elicits a similar traumatic response as a single seismic boom. But this isn't really about that. Besides, the only way one could fully appreciate the depth of the cPTSD I am working through would be for me to invade the privacy of too many lives. Just trust me. It's a hot mess. It's complicated. And I'm trying.

Yesterday, I shared how much I missed writing. How I felt it might be time to rebalance my life to resuscitate my blogging. I shared how I read some of the things I wrote and have a hard time believing they were my words. Writing is a skill. You get rusty and I am worse than the tin man.

Tomorrow, I head for New Orleans for my great adventure at the Annual AACR meeting. I will miss Lori, my always partner in crime at these meetings. I know it will be a transformative experience. I already know many of the participants in the Scientist <--->  Survivor program (SSP). I can't wait to be in the company of the genius minds who are working diligently to change the direction of cancer, to make a real difference to bring us outcomes that will be game-changers, that will matter to patients. As everyone tells me to have a great time in NOLA, they think I'm lying when I say I will see little more than the inside of the convention center. With over 18K people and simultaneous presentations, there's simply too much for me cram into four days, to think about beads or being busted down on Bourbon Street.

This is my third trip to this meeting, each time as a participant in the SSP. Karen hides behind the scenes and since I am going to be responsible for writing a few blog posts, frankly, she can kiss my ass because SHE is going to be featured in one of mine. You simply can't pull off the sheer volume of work that is required to put this program together and expect no one is going to notice. Peter Kuhn is my scientist partner for the small working group of advocates I will mentor, or try to. The man is so brilliant I can't understand one tenth of what he says but still I am blinded by his brilliance. And Dr. Anna Barker who runs the program? Just watching her walk into a room, any room and I am overwhelmed by the feeling of inspiration that simply washes over me. And that's before she opens her mouth.

That people of this stature want to hear from the patient population, that they understand we have much to bring to the table, that they aren't simply doing this to say they are patient centered and then pat us on the head and send us on our way - well, quite simply, that speaks volumes. That is the ship that I want to be on. The SS AACR. hmmmmmmmm? The SSP AACR??

I know that when I return, I hope my writing will be more frequent. I have a tiny voice in my ear, the voice of the person who pushed me to launch this blog, encouraging me to get started on another writing project. I'm at a place mentally, emotionally, physically and geographically that makes sense for me to be writing. So, I'm going to finish packing. I'm going to enjoy NOLA and then go back for a real visit so I can make some trouble on Bourbon Street. I'm going to tie up some loose ends that have been hanging above my head for far too long. And I'm going to let the voice in my gut guide my direction.

I may be re-running a few blog posts over the next couple of days. Some of the things I wrote did make sense. They made a difference, at least to me. It's sad that some of the stuff is years old and still relevant. The idea for the reruns brings me to thank Don Kerr who is putting together a book, and sent me and email to ask if he could include an old post I wrote. He may have pushed that very domino that my dear friend already had her finger on.

I'm not in Kansas anymore. Someone grab the oil can.

(Advance apologies for the comment moderation that may or may not pop up should you wish to leave a note. There was so much spam that got through to many of the older posts, I had to do it. Deleting 50 messages from, likely the same IP address, with the same stupidity finally pushed me to the dark side)

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  1. Writing helps me connect what is happening around me. I too was diagnosed with cPTSD, the biggest thing for me was to give it a name and my experiences some solid explanation. Glad to see you will be writing more!

    1. Mona Lisa,
      Giving it a name makes it much less scary. It's like shining a light into the darkness. I have to recover from AACR but yes, I will be writing again. I can't have TWO separate people mention "book" - neither knows the other and each had an angle completely different from what I do here. Having a rainbow show up over my beach today and a blog post with Tin Man in the title. No clue what it all means. Just know it MUST mean something.

  2. Yes - you need to start writing again. And don't forget my grandmother (my mom's mom) She lived to be 85 with all of her faculties. By the way, I'm ready for New Orleans whenever you are. Not that you need your mother with you. Hope you bring back some encouraging news from the convention.

    1. We would have had a great time, getting into appropriate mother daughter trouble. I think we've officially crossed the line and we can go find some trouble.
      I love you, mom.

  3. Hi Tin Man ~ It's good to hear from you again. I'm right beside you in the "rust" department. I think I've posted once a month this year (an almost missed March) whereas I used to post once a week! Personally, I think it's ok to take a sabbatical; take a deep breath and a well-needed rest from something. You will only be stronger when you get back to it. I look forward to future posts.

    Enjoy the conference! I can hardly wait to read your tweets.

    1. There was limited tweeting, Heather. Can't tweet on the run, can tweet when I'm trying to keep up with things that are so damn brilliant. I have lots of notes. I hope to make sense of them.
      The conference was everything I'd hoped for and SO much more!

  4. This is a good post !
    The words fly. They can, no, they DO get quite colorful and yes, downright raunchy. And sometimes, those are the only words that will suffice.

  5. My PCP thinks I have PTSD. I didn't have chemo, but I did have 7 surgeries in 8 months last year, as well as c. diff (3x), a major infection, a blood clot, and a hemorrhage. I know that I am not as sharp as I was. That is a major admission for me, as I make my living with my brain. PCP thought I should see a therapist, which I have been resisting. But I find I am so angry ... maybe I should just do it.

    1. Cathy,
      Just do it. I resisted, too and the fact is, when you find the right fit, it can be a life changing experience.

      You have been through MUCH and the anesthesia from the surgeries causes inflammation that adds to the brain mess. This has been suggested by some of the most brilliant minds in the "chemobrain" researcher arena. Add in all of those other rather significant medical issues and I'm not surprised one bit that your PCP thinks PTSD may be an issue. I ran the entire gamut of emotions: frustrated, sad, angry, overwhelmed and then, I found my way through it. This is not to say I'm able to do anything in the fashion I could (see next post about the four hours I lost and how THAT pissed me off), but I'm definitely more forgiving of my shortcomings.



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