Hi! Another Wednesday and time for me to feature one of my favourite bloggers. Introducing AnneMarie Ciccarella:
AnneMarie is a five-year breast cancer survivor with a significant family cluster of disease. Forced to step down from a high functioning accounting position as a result of cognitive issues, she embarked on path toward patient advocacy and cancer activism. She volunteers at the hospital where she was treated and is the NY Organizer for the Love Avon Army of Women. She is involved with a number of other organizations and has focused her efforts upon making sure the billions of dollars donated each year for breast cancer are being used to help those in need and to fund meaningful research. AnneMarie resides in a suburb of NYC. AnmeMarie blogs at: www.chemo-brain.blogspot.com
It feels pretty damn good to be able to make such a bold statement and in my typical, wise-cracking fashion, upon the 687 edits, you have to get past the silliness to understand why I am thrilled enough to make this statement.
I was cleaning house. Silly stuff. Can’t even recall most of the silly stuff but I do recall going through old messages in my voice mail. One of the messages was from the doctor who is doing the research study on chemobrain. This would be that study I was ineligible for when I didn’t fail the assessment test quite good enough.
I knew I failed the test and there wasn’t a soul on the planet who was going to tell me otherwise. Read: My motivation may have been selfish, my motivation was DEFINITELY selfish. But at the end of the day, no matter the motivating factor(s), I MADE a Difference! When I learned about the study, I contacted the research assistant as quickly as I could grab the phone and correctly dial the number without transposing anything. Wait. We don’t “dial” numbers anymore. Ok…. as quickly as I could push the buttons.
I am not exaggerating or trying to be dramatic for effect when I state that I was bitterly disappointed to be told I was not eligible for the study. I was SO sure I performed miserably in the phone assessment. I continued to beat my head against the wall for another week. I did some research of my own and then contacted the girl who did my phone evaluation. I wanted her to recommend a good neuropsychologist. I was going for a private evaluation. I KNEW something was wrong. Just like we ALL know something is wrong.
My frustration led to action (on my part) and that led to I Made A Difference. I didn’t know it until I met with the research assistant for my final evaluation. She said something when we were saying goodbye. She thanked me for being persistent. She told me it was my persistence that opened the door for many others.
I don’t think I fully understood what SHE was saying. And then, I did. I was in a “clean up mode” and despite the fact I had tons of paperwork on deadline, my priority? Clean the voice mail on my phone. I got tired of hearing, “You have 2 new messages and 983 saved messages.” Was I trying for a Guinness World Record? Perhaps I was waiting for the mailbox to be overloaded so anyone calling would hear, “Sorry, this mailbox is full.”?
But then, I might miss a really important, very special invitation to oh, perhaps the Kodak Theater because I was nominated for an Academy Award for Best Documentary Short. Or, I could miss that call from the Nobel people. Maybe I was being invited to Oslo where they would bestow me with the Peace Prize. Or Stockholm because my blogging earned me recognition worthy of the Literature Award…. Hey, stop snickering. This is my mind wandering. I’m just letting you sneak a peek. I dream big (meaning, there might even be calls from Cannes, Redford for Sundance and Mr. DeNiro for Tribeca, I mean what the hell, why stop at the Oscars). Yup, I dream big!! Generally, I fail even bigger. Mostly, I laugh at all of it.
Is there a point anywhere? Not yet. I am now trying to decide who can produce my documentary about how I brought all of the breast cancer groups together toward a common goal. How my efforts stopped the sniping and how the research advanced exponentially as a direct result of my tenacity. And thank GOD I cleared my voicemail. The Academy has your Oscar and Norway has your Peace Prize and in Stockholm, they want a nicely written synopsis of your entire life story to use when they hand you the Nobel Prize for Literature. I would have missed ALL of these messages!
Earth to AM: ”Is your brain anywhere in the building or has it gone in search of Elvis??”
Brain to earth: ”I’m trying to determine how I can meet this challenge and actually take steps toward such a lofty goal.”
Earth to brain: ”Get back to the point. After all, You Did Make A Difference.”
Brain to fingers: ”Quit the nonsense and move on already.”
Time to dispense with the silliness and get down to it. I DID Make A Difference. When I was Officially A Study Reject, I was able to schedule a private appointment with the same doctor who was doing the study. Before any testing began, I did a self assessment and then had a conversation with the doctor that lasted for at least ninety minutes. I remember telling her that I could recall the PRECISE incident when I experienced my first word drop. Although I didn’t realize it at the time, that was my first official bout with chemobrain. She seemed somewhat impressed with the clarity of my recollection.
After our conversation, she suggested options and her first suggestion was the clinical study. I told her I already tried that and was deemed “too high functioning.” She said that the phone assessments only tell part of the story. And so began the mental gymnastics. Some of the tests were IN-SANE. Most were challenging. A couple were easy. And after two hours, I’m pretty sure I had white matter dripping out of my ears. The next step was for me to return to review the results with the doctor. At least I would KNOW where I had issues and at the absolute very least, I could stop beating myself up over anything that may have been identified as a trouble area.
Instead, within two days I got a call directly from the doctor. I was so excited to hear her voice and to hear her say, “you are eligible” and please call me back directly, I didn’t actually listen to the message. And the other day, I did listen. “AnneMarie, please call me back as soon as possible. Because your results were right on the borderline of eligibility, I requested a slight change in the study criteria and I was just notified that the change was approved. There are additional tests that I need to administer for the study that were not part of the standard evaluation.”
Bottom line, she saw I was struggling and she believed this slight change in the criteria would improve the study. Because I was insistent that I needed to be evaluated, a number of other previously ineligible women were contacted and invited to participate in the study. I tip my hat to the brilliance of a doctor who realized the importance of keeping an open mind during our conversation to take an “intangible” and find a way to make it into a measurable scientific aspect.
I don’t know what it was about our conversation that sparked her idea, I don’t know what the slight change was……I only know my persistence made a difference. The study was changed to be more inclusive. There is a broader representation of the chemobrain population and more women were validated, officially told… “Yup, your brain has officially exited the building.”
I don’t know if the software I used made a difference for me. I feel like I’m somewhat better in some aspects but the inability to stay on task or to even START a task seems to have gotten worse. I’m waiting to get the results of the three evaluations. I’m quite curious.
At the end of the day, the lesson is this. Don’t be so quick to throw in the towel. No one knows you better than YOU. If you believe something isn’t right, pay attention. And if you see a pattern and you are relatively sure you are NOT a hypochondriac or you have a sufficent period of lucidity to realize you are NOT afflicted with Münchausen’s, make noise.
I made noise
I Made A Difference.
You can, too.