EXHALING-WITH GOOD RESULTS!!

Yesterday, my photo contribution  to Catherine Brunelle's new website was given a shout out on twitter.

It was appropriately timed.  My Petrified Survivor Self Portrait.  Waiting for test results.

October was doctor month.  I don't do scans.  It's bloodwork, it's tissue samples, it's a skin check and for the bonus round, this year, it was a colonoscopy.  In April, I will have doctor month again.  They are at six month intervals.  This April, I expect there will be an MRI to make sure those implants are not leaking.  And more bloodwork and still more tissue samples.

Thanks to the unknown nature of my BRCA mutations, I am considered at risk for breast cancer (been there, done that, I'll pass on round two if you don't mind), ovarian cancer (removed them, too), colon cancer (skipped my scheduled two year follow up due to another surgery), MELANOMA!?  Who the hell would have thunk that one?? (had two suspicious "things" already removed-this was the first time I walked away with, "see ya next year")

Not on the menu?  Cervical Cancer.  That just happened all on its own.  A whole separate issue.  I don't think I was 6 months clear of the breast cancer debacle when I entered gynecological hell.  Every three months.  Monday night, I finally pulled out the pathology report that started this episode.  The initial report from over two years ago.  The one that put me back into an operating room for a surgical biopsy and ultimately, the complete hysterectomy.  It was scary. "High grade" and "can't rule out glands" and a mess of other things that sounded very ominous.

Atypia despite risk reducing surgery???  ARE you KIDDING ME???  Must I ALWAYS pull the frikken short straw? Perspective.  My shit has all been fixable.  Scarring emotionally, physically but still, Fixable.  Still.  Again?  Several samples taken and sent to the skilled pathologists in the labs at MSK.  What began on October 31, "There were abnormal cells" was brought to a conclusion last evening when the doctor said,

"Everything is BENIGN."

One month in "Waiting Sucks Hell" and I'm free for SIX months!  NOT ONLY did I get GOOD results, it didn't alter my six month doctor plan either!!

I was jumping all over the place, Gaga blasting "I'm on the edge of glory......." and a gigantic ALL CAPS TWEET ABOUT GOOD RESULTS, NO CANCER, IT'S BENIGN.

So, for everyone who was sending thoughts, vibes, prayers, sticking pins in voodoo dolls, burning candles, crossing fingers, THANK YOU THANK YOU THANK YOU.

And for everyone who took the time to send me a tweet when I sent my shriek tweet THANK YOU THANK YOU THANK YOU.

I was expecting bad news.  I was prepared to hear bad news.  I also knew I would NOT be able to man up and sit back at the oncology table for a plateful of chemotherapy and/or radiation.  Surgery?  No problem.  Put me to sleep and do what you want.  That other stuff.  I just finished a five year marathon and I KNOW I did not have it in me to enter the iron man competition.


My November 30th post is officially complete.  This is just a postscript.  It's the October/November postscript.
When I got off the phone, I jumped into my car, late for my weekly yoga session, how fitting to hear this very poignant song.  I was instantly reminded of how we carry each other.  You carried me.  And I will be there to do the same should you need me.  It always brings a tear to my eye.

Last night, it created quite a flood.....

The road is long

With many a winding turn

That leads us to who knows where

Who knows when

But I'm strong

Strong enough to carry him
He ain't heavy, he's my brother

So on we go

His welfare is of my concern

No burden is he to bear

We'll get there

For I know

He would not encumber me
He ain't heavy, he's my brother

If I'm laden at all
I'm laden with sadness

That everyone's heart

Isn't filled with the gladness
Of love for one another

It's a long, long road

From which there is no return

While we're on the way to there

Why not share

And the load

Doesn't weigh me down at all
He ain't heavy, he's my brother

TSA AND THE GUMMY BEARS

I can't complain about the way the agent approached me.  I don't recall any discomfort.  I do recall her saying she would need to "do a pat down" and she would be using the back of her hands.  After the fact?  I realized she specifically noted the area of my body that was being scrutinized.  And the only area that she would be touching........

My brain is on a time delay and on principle, I am pissed.  It's hours later so being pissed off is very much time delayed, but I'm pissed.  I was in Boston for the weekend and Logan Airport has full body scanners.  I've flown a number of times since my mastectomy.  I've strolled barefoot through screening areas at JFK, LaGuardia, Miami, DFW, Tuscon, Aruba, Vegas & who knows where else while my laptop, phone and a ziplock bag took a ride on the X-ray conveyor with my carry on and my purse.

I think I was stunned by the swiftness.  I know I was called forward by a male officer and I believe it was also a man who requested I remove my watch and showed me where to position my feet and how to place my hands.  And then, there was a very pleasant woman with blue gloves explaining the pat down process.  She appeared from out of nowhere.

Following the "pat down" which was in full view of the other four lines of security on one of THE most heavily traveled days of the year (the Sunday following Thanksgiving-a fun factoid from the font), I was told she wasn't quite finished with the slightly enhanced security check.  My hands need to be tested for resin.  HUH?  As I said-it was quick but I remember searching in my challenged brain to recall what the hell I might have touched that would show up as some type of suspicious residue requiring her to pass what looked like a gieger counter wand over my palms and fingers.  I think I did a flashback to the operating room for a split second.  I remember a wand similar in appearance being passed under my arm.  I still had my own body parts and the surgeon was showing another surgeon how to locate the sentinel nodes.

This entire event took less than two minutes and being blindsided, I just followed instructions.  It was when we arrived at the gate and I had a chance to actually PROCESS the event that I began to get annoyed.  I've NEVER been pulled off a security line..... I don't think I ever had my carry on opened..... I'm the one who follows the rules...... three ounce containers, one quart ziplock, make sure the chargers/wires are attached to the electronic devices when I toss them in the gray bin. (FYI-that's not a rule, the wire stuff.... I just always figured a tangled mess of wires would look like a bomb or something so I just always made sure they weren't in their usual tangled mess-anything to keep the flow of traffic moving on the security line.  I'm just That Girl.)  Airport security is one thing I know how to do and I do it rather well if I must say so myself.

Sunday night when I finally kicked back and began to relax, I morphed into Ms. Internet Investigation.  The gummy bears used in my reconstructive surgery are made of cohesive gel and they are foreign objects. Ergo, the Wizard behind the curtain who was looking at the screen and saw the foreign objects sent an immediate radio alert to the kind female agent.  In my humble opinion, The Wizard should have been The Scarecrow.  If he only had a brain......

I'm cool with whatever is being done in the name of keeping us safe.  I am ok with the fact that I will likely be subjected to a pat down in any airport where full body scans being used.  As I read the comments on various cancer websites, I understand the actual serial numbers of these stupid gummies are visible with these scanners (if I am to believe everything I find on the internet.... ).  And, I realize that others may not be as cavalier about being pulled off the line.  I hope for the sake of those women, TSA can find a better way to deal specifically with the breast cancer crowd.  Some of us have enough trouble with body image issues.  Maybe the airport shouldn't be yet one more reminder of Club Membership?  Just throwin it out there for discussion, suggestion, solution on behalf of the sisterhood.

As for me?  I have no attachment or modesty issues surrounding my amputated body parts and their replacements. The masterful plastic surgeon gave me some pretty great looking prosthetics.  (And, by the way, Mr. Wizard..... what do you think about the nipple reconstruction and the tattoos.  Nice job, no?)  Apparently, the resin wand was to make sure I didn't JUST insert those gummies under my skin for use on the plane.  I'm guessing the thought process is I would perform another self surgery to get the things out and turn them into an explosive?

In hindsight, I don't like the fact that I was felt up by a woman even if she was using the back of her hands. It had nothing to do with being felt up, either.  It just would have been nice if she had attempted a little seduction beforehand.  I may be easy, but I'm not THAT cheap.  Hell, the least she could have done was offer to buy me a drink before copping a feel.

LOOKS LIKE A DUCK, QUACKS LIKE A DUCK?

What follows below appeared in the NY Times.  The print version appeared in the 11-22-11 edition.

Palindrome Day.  Biopsy Day.  And, as I await the results of the biopsy of several different areas of "abnormal looking cells" accumulated by the doctor, I'm afraid I'm going to take an oppositional view of the final paragraph that explains how they managed to lose the word cancer when talking about cervical cell changes.

Forgive me for taking exception with the whole thing but I am The Patient.  I am The Survivor of an invasive cancer. I am The Terrified One at check up time.  I am The Captain of my health care team.  Technically, I am a breast cancer patient/survivor.  But, I had a cervical thing begin less than one year after I was "post active treatment."


I HAD a horrible pathology report a few years ago.  I had those pesky intraepithelial changes extending... blah blah blah......Ultimately, an operating room biopsy was done and ultimately to the highest power, the end result was a total hysterectomy.  That surgery, which was done exactly one year ago, was to be proactive.  I was ok but scar tissue was causing a problem with the routine annual screening.  The hysterectomy was NOT because I had cervical cancer.  It was to PREVENT THIS from happening.  Nothing to produce abnormal cells.   

And yet, my routine exam turned up abnormal cells.  WTF???  Wasn't' that the purpose of the surgery in the first place? There is always a chance cells may be left behind.  Unlikely.  But it could happen.  And I know this.  And geez, a shock....It Did Happen.  Cells left behind and cells turned abnormal since my last test six months ago.  I'm choosing the "It's Nothing" approach despite the fact that I've been BLINDSIDED each and every time I've let my guard down. But I'm not choosing total ignorance.  I was screened for CANCER last week.  And, if anything is even slightly more than "low grade" I'm fairly sure there will be some sort of treatment on the table.

This is very out of character for me.  I have NO idea what will happen should any of this stuff be "weird" and above a number 1 (please scroll to the end where the EXTRA GIANT words are underlined).  If I have a "Sort Of" a "Grade 2 neoplasia," which was renamed to remove the terror of the word cancer, I think the "sort of" treatment could possibly involve that poison/burn portion of the program.  Under normal circumstances this would not be the case.  This "non cancer" would involve an additional surgical (and "curative") biopsy.  My circumstances aren't normal.  The parts were already removed.  One year ago.  In other words, there's nothing to slash.  Leaving the options:  burn, poison or do nothing.

It just better BE nothing because I could be tempted to DO nothing which I'm sure would be against the wishes of the gynecological oncologist.  Oh, I keep forgetting, if it's "something," it's not cancer because they came up with a better way of saying "something."  The problem with this scenario?  They haven't come up with a better way of treating "something."  The minute neoplasia requires radiation or chemotherapy because it will spread if nothing is done, well, hell, that sounds an awful lot like cancer to me.

I'm pretty sure I'm being unfair.  In fact, I'm certain I am.  Most people without a cervix don't end up like me.  Aren't I just SO special??  And the wait continues.  Day 6 and counting.  Sure wish I knew what was happening in that petrie dish.  I'm sure it's nothing.  Yes, definitely.  It's NOTHING.  Worst case, "weird cells" ... not cancer.  Just Weird Cells. Weird cells that ***could*** require ....  Nevermind, I'm not going there.  

This is the NY Times article:


"CANCER" OR "WEIRD CELLS": WHICH SOUNDS DEADLIER?

My friend’s mother got terrifying news after she had a mammogram. She had Stage 0 breast cancer. Cancer. That dreadful word. Of course she had to have surgery to get it out of her breast, followed by hormonal therapy.  Or did she?

Though it is impossible to say whether the treatment was necessary in this case, one thing is growing increasingly clear to many researchers: The word “cancer” is out of date, and all too often it can be unnecessarily frightening.

“Cancer” is used, these experts say, for far too many conditions that are very different in their prognoses — from “Stage 0 breast cancer,” which may be harmless if left alone, to glioblastomas, brain tumors with a dismal prognosis no matter what treatment is tried.

It is like saying a person has “mental illness” when he or she might have schizophrenia or mild depression or an eating disorder.

Now, some medical experts have recommended getting rid of the word “cancer” altogether for certain conditions that may or may not be potentially fatal.

The idea of cancer as a progressive disease that will kill if the cells are not destroyed dates to the 19th century, said Dr. Otis Brawley, chief scientific and medical officer at the American Cancer Society. A German pathologist, Rudolph Virchow, examined tissue taken at autopsy from people who had died of their cancers, looking at the cells under a light microscope and drawing pictures of what he saw.

Virchow was a spectacular artist, and he ended up being the first to describe a variety of cancers — leukemia, breast cancer, colon cancer, lung cancer.

Of course, his patients were dead. So when he noted that aberrant-looking cells will kill, it made sense. The deranged cells were cancers, and cancers were fatal.

Now, Dr. Brawley said, the situation is very different. Instead of taking tissue from someone who died, a doctor takes tissue from a living patient, threading a thin needle into a woman’s breast or a man’s prostate, for example. Then a pathologist looks for abnormal cells.

Yet “how it looks under a microscope,” Dr. Brawley said, “does not always predict.” That is especially true for things like Stage 0 breast cancer or similar conditions in other areas of the body — conditions detected by screening and not by symptoms or by feel.

Researchers have come to appreciate this conundrum.

“The definition of cancer has changed,” said Dr. Robert Aronowitz, a professor of history and sociology of medicine at the University of Pennsylvania.

Many medical investigators now speak in terms of the probability that a tumor is deadly. And they talk of a newly recognized risk of cancer screening — overdiagnosis. Screening can find what are actually harmless, if abnormal-looking, clusters of cells.

But since it is not known for sure whether they will develop into fatal cancers, doctors tend to treat them with the same methods that they use to treat clearly invasive cancers. Screening is finding “cancers” that did not need to be found. So maybe “cancer” is not always the right word for them.

That happened recently with Stage 0 breast cancer, also known as ductal carcinoma in situ, or D.C.I.S. It is a small accumulation of abnormal-looking cells inside the milk ducts of the breast. There’s no lump, nothing to be felt. In fact, Stage 0 was almost never detected before the advent of mammography screening.

Now, with widespread screening, this particular diagnosis accounts for about 20 percent of all breast cancers. That is, if it actually is cancer. After all, it is confined to a milk duct, has not spread into the rest of the breast, and may never spread if left alone — it might even go away.

It could also break free and enter the breast tissue. But for now, it is hard to know in many cases whether it makes any difference to treat D.C.I.S. right away or to wait to see if it spreads, treating it then.

Two years ago, an expert panel at the National Institutes of Health said the condition should be renamed. Get rid of the loaded word “carcinoma,” the panel said. A carcinoma is invasive; D.C.I.S. has not invaded the breast. If those cells do invade, they are no longer D.C.I.S. Then they are cancer. So call the condition something else, perhaps “high-grade dysplasia.”

The word “cancer” is so powerful it overwhelms any conversation about what Stage 0 breast cancer actually is, said Cynthia Pearson, executive director of the National Women’s Health Network. When women contact her group to ask about cancer treatments, “sometimes we’re well into the conversation with them before it comes out that they don’t actually have an invasive cancer.”

The same situation arises with prostate cancer screening.

The pathologist Donald Gleason, who invented Gleason scoring for prostate tumors, wanted to rename a very common tumor — the so-called Gleason 3 + 3 — “adenosis” instead of cancer, Dr. Brawley said. His idea was that by calling a 3 + 3 “cancer,” men and their doctors would feel they had to get rid of it right away.

Despite Dr. Gleason’s wishes, 3 + 3 cells are still called cancer. And despite the panel’s advice about D.C.I.S., that name has not changed either.

Cervical cancer specialists had better luck. In 1988, they changed the name of a sort of Stage 0 of the cervix. It had been called cervical carcinoma in situ. They renamed it cervical intraepithelial neoplasia, Grades 1 to 3, taking away the cancer connotation.

But Dr. Brawley, for one, has not given up on educating doctors and patients about the general inadequacy of the word “cancer.” As he put it, “The movement is not quite dead.”

FOUR DAYS OF GIVING THANKS

Happy Thanksgiving to my friends in the US and to the people who are reading this in some very far away places, I am THANKFUL for you.  I did the gratitude thing yesterday.  I am re-dun-dant  e-nough.

Seeing all of the countries is thrilling to me and I hope you will keep reading..... It is exhilarating to know this silly little blog has been read in over THIRTY countries on every continent except Africa (so if you have a trip planned, do me a solid and hit the blog page from a smartphone just so I can have the cheap thrill of seeing an African country pop up?) and Antarctica (which doesn't count since I don't think anyone actually maintains a residence on that particular block of ice and IF I'm incorrect and there is a population, I'm going with, NO INTERNET due to sub-freezing climate).

Who knew?  I had no expectations.  I wanted to clear the clog in the fog that had become My Brain.  Not only has the clog cleared, the fog lifted.  I still have most (all) of the same issues but I opened myself to embrace change.  The change has been life altering.  If I managed to validate Just One Person which was my goal when I set about this blogging business, I am fulfilled.

My brain has a mind of its own and my life has a life of ITS own and I'm just following its lead.  If you are following, too......  How can I possibly say thank you?  Sometimes, it's best to keep it simple.

Thank You For Welcoming Me Into Your Lives

It doesn't get any simpler or more straightforward OR more heartfelt.......

Back on Monday!

These are a few of my own favorite entries that were posted during the first month of this little blog's existence......

My Cancerversary

My First Word Drop

Unexplained Falls

Don't Patronize Me, You Don't GET IT!

24 Hours of Mistakes

And, My MOST Favorite from that month, not because I love the post the best, but because I realized someone was laughing with me:

The Day Barb Told Me She Was Reading

Sending love to all......

AnneMarie
xoxoxo

GIVING THANKS ON THANKSGIVING EVE

I have much to be thankful for......  Several months ago, I was in a fit of anger and my very dear friend was administering some much needed "Slap Therapy."  This is, in the spirit of my most favorite movie, also known as "SNAP OUT OF IT" Therapy......  I was annoyed and she insisted I must make a gratitude list.  I'm pretty sure I very lovingly told her to take the gratitude list and GFHerself or shove it or something along those lines.  I didn't want to be grateful.  I was quite happy being pissed off.....

I know this reads like I just love to bitch and moan.  I don't.  It's just that happy doesn't sell newspapers.  And generally, it's the negative things that elicit the biggest change.  Think about it.  If you are strolling along life and everything is just perfect, WHY would you want to change.  Why would you NEED to change.  If we are honest with ourselves, we all have good things and most of us have some degree of shitty stuff.

Sometimes, I am IN a shitstorm.  Sometimes, I AM The Shitstorm.  And they do seem to hit hard and one thing always seems to pile on top of the other. I've asked my therapist TWICE within the past thirty days to "Tell me if I'm being a drama queen because when I look at xyz events, I AM THE COMMON THREAD.  Am I attracting this shit so I can be in the center?"  I'm pretty open and honest in my writing but there are a couple of back stories that would not be appropriate for me to share for varying reasons.  I'm asking for trust when I say the shit that piles atop The Other Shit.... all pretty significant "Life Change Units."

And, WT (Wise Therapist) who is not a "How does that make you FEEL, AnneMarie" kinda guy has gone to great lengths to reassure me I am NOT a drama queen.  I love this guy.  He will make suggestions, he will validate my feelings, he will express an opinion or provide a different point of view and mostly he DOES answer my questions. He's very hands on.  I need hands on.  If I want to just spend an hour bitchin, I call my GFY girlfriend.  I bitch, she tells me make a gratitude list, I tell her to GFH, she joins The Bitch Session and mostly, it seems to always conclude with a bottle of vodka.

I've made some very big changes in my life in the past four months.  Four months.  And it seems like an eternity.  And every personal change has brought me enormous growth and a kind of Fill The Soul feeling.  I began this as a skeptic. Somewhat jaded. And, I am The Cliche.  I got on the wave and let it take me to places I couldn't possibly dream of six or seven months ago.  Talk about life turning on a dime....  Warp speed.... Great changes.

And then, there are plenty of aspects of my life that I wouldn't change for anything.

I have much to be thankful for.... I have a great family.  If I took the time to go through each person I would undoubtedly forget someone.  I will steer clear of the list......  with the exception of Mom who brought me into this world and my two kids since I brought them into the world.....  They rock my world.  And so does everyone else in my immediate and my very large extended family.  I know I am never alone.  I can FEEL the love and support.

I am mostly healthy with the exception of a few minor inconveniences (including a test for which I have NO results).  I have a small group of wonderful friends.  I have a comfy home, food on the table, a car to get myself around-I am thankful for my husband who continues to provide financial support even as we sort out our own version of Anew Direction...... I AM fortunate. For these and for so many more "things" and "situations" (NOT Jersey Shore-ish either although going out is another thing that is on the Happy Side of the list even if I am aging backwards and find myself in collegiate "situations."),  I am grateful.

Randomly, for nothing "practical" or necessarily "tangible" but just because..... this makes me FEEL the gratitude:

• My new blogger friend Rachel who is spending her holiday in Florida.  I was so thrilled to read this, it was my first "feel good" story of this holiday season.  I **think** I commented on the post that her vacation was going at the top of my gratitude list.  
• My very dear friend's son who finished law school and almost immediately upon graduating had a "germ cell cancer" explode in his chest.  He just got a three month, post treatment NED, AND, I just found out, took the Bar Exam and passed! This is so special to me.  I've know this "kid" since he was three years old. He is my official holiday miracle story.
• The Visible Ink program at Sloan Kettering which is why I began blogging.  And MOST especially, Anna Kotopoulos, my mentor.  SHE is the reason I stayed motivated and this blog has been the spark that ignited every single change in my life that has followed.  Going into If/Then Logic which is always dangerous with my brain, but IF the blog was the spark and the blog is because of Anna's selflessness in volunteering her time, THEN Anna changed my life since she helped move me along.  Yes, ANNA.... You DID change my life.  Eternal gratitude for helping me embark on a life changing journey.
• Which immediate leads to Lorraine Aguilar, my yoga instructor.  I am SO fortunate we made an instant connection.  She has steadily guided me through some tumultuous times over the past year.  Our weekly sessions are consistently "The Best Hour of My Week" and the reason I have been able to stay centered. Yoga quiets my mind which in turn allows me to Pay Attention to that which is important.
• The bloggers and the tweeters who have embraced me and my writing even as I am still very much the new kid on the block.  I want to thank Marie Ennis for including this blog in a "Friday Round-Up" which I am certain sent many people here.  I want to publicly let Marie know I am thinking of her during what is a very rough time for her.  I still consider myself The Dim Twit and my writing pales in comparison to the accomplished folks on the blogroll (and again, that list is an ever evolving thing...... omissions are many and I hope to do a heavy cleaning on the blog-if my brain lets me..... ).  When I see a private tweet from someone in SOUTH AFRICA sending me good thoughts because I had a bit of a bad day..... they haven't invented the words to describe what that means.... a random 140 character note from a "stranger" ..... whose kind words soothed me in a bad moment.  There is no more powerful act than a "random act of kindness."  I love this quote: "To the world you might be one person, but to one person you might just be the world."    
• My very first online support group, my friends who have held me up for close to TEN years and we still "talk" frequently.  Alphabetically, Barb(C), Barb(S), CARMEN (in caps since this blog was HER idea to begin with), Cindy, Deb, Robin & Wendy.  Mostly, we never met or even spoke on the phone.  These women are the "realest friends" I have.  They can all take credit for the fact that I can sit and put words on a computer screen as if I'm conversing.  I've had tons of practice.  They saw me through cancer. They saw me through the death of my dad.  We've become "cyber aunts" when someone became a grandma. We celebrated marriages and graduations-we laugh together, we cry together, we beat the shit out of people on behalf of each other (we don't ever beat the shit out of each other), although we can count on sound and truthful feedback in any, every and ALL situations. THEY are special in ways that are indescribable.
• My involvement in the Army of Women and how I am compelled to move toward some sort of an advocate/activist role in the Breast Cancer 2020 Deadline.  Doing nothing is not an option and I am thankful there are people who have stepped up to change the conversation.  I want better for my daughter, for my nieces, for the entire next generation.  I've come to dislike the words "family history" and it upsets me to hear twenty-somethings whom I love dearly ask about BRCA mutations or mention removing ovaries to reduce breast cancer risk.  The status quo=UNacceptable.  Treatment advances from the cheap seats where I sit=negligible.  Progress?  Not so much when I look at what went on in 1987 with mom and what went on with me since this began.
• Everyone who took time to comment on this blog but most especially, those very first comments.  And a comment from a woman in England who felt "vindicated" when she realized she wasn't alone having dealt with "chemobrain" since 2002.  There are many of us "In The Fog" and I believe many more who must hide or cover up their limitations because jobs/careers are on the line.  So, for every single person who feels they are no longer alone because of my silliness......  I am thankful if this silliness has helped in any teeny tiny manner.

I am hesitant to post this because there are many more noteworthy things that I am failing to mention.  I am SURE more is missing than is mentioned.  That's the problem with talking about specifics and this stuff is somewhat specific.

I suppose I should express TONS of gratitude to anyone whom I may have pissed off by failing to include a mention. Since my brain engages and then disengages at will.......  I am thankful for the forgiveness of those I've pissed off intentionally (my kids in prior posts) and unintentionally, anyone who is staring at the screen saying, "Wow, she's some ingrate for not saying blahblah."  If you just forgave me, I am thankful!

Mostly, I'm grateful for YOU.  Anyone who is staring at this screen.  Everyone who ever stared at this screen...... Yep, I AM grateful.

PALINDROME DAY

Today is a palindrome.

11-22-11

If that hint isn't enough, google the word.  You will get 2,700,000 results in under 0.07 seconds.

Me?  I'm at the doctor's office having a test.

11-22-11 isn't a palindrome for me.  It's just a regular old reminder of life after the dust settles.

I'm a card carrying member of the club.  And you can't just quit the club.

PRE BIOPSY MONDAY

I was in a pissy mood on Friday.  I had good reason.  But, it was a secret so I was completely blocked in the writing department.

I was waiting for mom to get a phone call.  That scan, mom's scan.....if you were following along, was done the same day that I was called about my need for an additional test.  My test is tomorrow.  It's Pre-Biopsy Day for me.

Last Friday, it was, "On the Edge of My Seat Day."  Mom's scan was okay.  Except for an area they were NOT scanning. Her pancreas.  She got a call from the oncologist late in the day on Thursday.  "Nothing to be concerned about, they look like tiny cysts but I want a surgeon to have a look."  Mom and I have this mutual "let's hide any bad news until we have an answer," and we fail EVERY single TIME.  It's just a question of how long it takes between the hang up with the doctor and placing the "I have to tell you something," call.  Whenever a conversation starts with those words, it's a fairly sure bet it's lousy news or scary news.  It's just never, "I have to tell you something," followed by, "I just hit LOTTO!"

So, within moments of her crappy phone call, she caved in and called me.  I know the doctor.  He's my guy, too.  I understand "doctor speak," and I most especially understand his accent, too.  When mom asked, "How am I supposed to NOT freak?"---- I had no acceptable answer.  I get it.  So, I did about 15 seconds of, "I know what you mean," and then, I just freaked right along with her..... Sometimes, you just want to be heard and sometimes, verbalizing the fears is like looking under the bed with the flashlight.  No monsters.

And it goes like this.....

First, I am sworn to secrecy.  There is a family wedding on Saturday and there will be NO damper on this event.  The only hand wringing?  Mom and Me.  Second, I realized there was only one solution at this moment.  "This is why you have valium, do you have any in the house?"  We continued to attempt nonsense chat-albeit with lots of The F Word flying.  When I determined she indeed took the pill, I did what any normal person might do......  grabbed the bottle of tequila.  (I waited to do anything that would render me unable to drive until I was sure it wouldn't be necessary for me to hop in the car.)

We commiserated on the phone until her valium kicked in and my tequila bottle went from the temperature I like (when I grab it from the freezer) to a bit too warm for my liking.  FYI, my little science experiment regarding the length of time it takes for the tequila to get too warm?  Precisely one hour, forty one minutes and a bunch of seconds. During that time my laptop was opened and closed at least a dozen times.  I recall hearing myself, "Get off the internet, mom, there is nothing to look."  AS IF......

Bottom line.  She got the call.  "We will rescan in three months."

Tomorrow, I'll be in the doc's office for MY test.  Presuming it's nothing, I too will be on the three month retest.  Brain right now?  Fried.

My brain seems to lose all sorts of important factoids.  Too bad I can't CHOOSE what I'd like to forget.  I'm pretty sure I'd lose a big chunk of the last decade.

WAITING NEVER GETS EASY

I'm trying to get into the spirit of the upcoming holiday.  Looking at my life and realizing I am thankful for so much. And I am.

But, I'm irritated at the moment with this onslaught of "being blindsided."  And I realize, that's okay, too.  It's not normal to expect that every day is going to be sprinkled with sunshine.

No coincidence that it's been two straight dreary ass rainy cold NY days.... I am definitely one with Mother Nature..... Apparently, the clouds that darken the sky, put a big damper on me, too.

Maybe I need to do a bit of retail therapy?

Maybe I'll feel more cheerful when I get to the salon and my grays are covered.  It will be especially helpful when my hair guru fixes the choppy mess I made of my bangs in a fit of "I can't STAND what my hair looks like" .....  (I need to take note here and keep all scissors out of sight when I get into one of those moods.)

I'm exercising my right to postpone my "Let's Give Thanks" and "Be Grateful" and "All That Cheer" stuff.

Last week, I was walking on sunshine and seven days later, that memory?  Now faint and beginning to fade.

I'm going to conjure up some images of being all dressed up and feeling oh so confident and thoroughly enjoying The Birthday Night, the big event, the main event and the day after.....

I'm in that Big C Holding Pattern right now.  Waiting for a test, waiting for a call and then, I will be waiting for results and all that other stupidity.....

Definitely off to distract myself......

Happy hour with the girls later on....

Two parties on Saturday..... two different outfits which I can accessorize during retail therapy.....

Think about a few exciting little projects I have in the works......

Appreciate that I made somewhat of a dent in the disaster area formerly known as my office.......

Best if I fill up on some silly stuff because it just occurred to me that it's not too smart to schedule a biopsy less than 48 hours in advance of a holiday that spans four days.

I'm working myself into a frenzy knowing what's on the other side of Friday.

HURRY UP AND WAIT!










 

INSPIRATION FROM MOM

After to back to back days of writing about brain damage and drug shortages causing (a-hem) "limited disruptions," it's time to take a breath.  


Mom sent me this and it's a beautifully worded two minute video that many may have already seen.  


It was new to me.  Allow me to share it with you.  I need some oil.


Simple Truths - We Hope You Enjoyed the movie!

BACK TO BUSINESS-DAY 2-DRUG SHORTAGES

In a few prior entries, I poked fun at myself for patting my own back.  But, I tend to find the needle in the haystack when it comes to certain medical news.  I find I am reading things that hit the headlines generally days or sometimes even weeks before I see it splashed across the headlines.  Does this make me smart?  Not really.  I'm just somewhat observant and that trusty iGoogle browser page (filled with all sorts of obscure journals) scours the internet saving me countless hours.  Until, that is, I see a story that intrigues me, piques my curiosity or just plain causes complete outrage.

This falls under the Outrage Category.

Back in August, I mentioned that drug shortage.  Apparently, the better resource for tracking these shortages is found at the American Society of Health-System Pharmacists.  I don't know why it's a better place to look than the FDA website, but I can come up with my own hypothesis.  I'll keep my opinions on that matter to myself.  You however, are free to discuss.  (Sarcasm aside, the ASHP site is more accurate as it accounts for the fact that drugs are off-labeled. Again however, details?  You will need to read and decipher on your own.  It's too much for me to deal with, particularly when I'm outraged and can't think straight because I'm emotionally amp'd up.)

Today, I see a headline from the American Medical Association stating that the shortage is "disruptive but limited to a few key areas."  I'll stick to my own agenda.  Chemotherapy.  Y'all know (nice Texan twang?).  The drugs that absolutely were key in scrambling my brain.....

On the present list, more than 80% of the drugs are "injectable generics" and there are, according to one spokesperson, four classes of drugs consistently in the top five on the shortage list always vying for The Best in Show, Number One spot.  Oncology is one of the four and at the moment, oncology is "taking the biggest hit."

I quickly scanned the list.  Two of MY cocktail drugs are on the list.  Methotrexate and fluorouracil (5-FU and F- YOU to the manufacturers that are responsible for this mess).  To see someone quoted as saying this situation is "distruptive but limited," is disgusting.

Again, with the numbers.  Why is it that the very thing that causes me the most significant difficulty with my brain mess (numbers), is the very thing that I am trying to explain??  I'll keep my explanation to my second grade math skills so as not to misstate anything.  I might suggest reading it directly.  I have a tendency to miss important points. Especially when I am so outraged that I turn into OCD AM.  I am outraged.  And yes, I am aware I stated this in its very own paragraph...... I am exponentially outraged.

JUST within oncology, this "limited disruption" only has the potential to cause problems for 550,000 cancer patients. Someone might like to explain what reads like a minor inconvenience to the kids of someone's mommy or daddy who may be in that group of over half a million whose very life depends upon the availability of these drugs and the necessity for them to be delivered at set intervals in order for them to be effective.

IF my ability to calculate percentages is still somewhat in tact, 30% of the drugs on this list are made by ONE manufacturer.  Quoting directly from the article, "two thirds of shortage drugs have, at most, three suppliers."  This sounds a little like a monopoly to me.  Didn't I learn back in the days when the dinosaurs walked the planet and I was in a basic high school history class that this government enacted laws to stop anyone from monopolizing an industry?

Buried way down in the article and only worthy of a phrase within a sentence:

"business decisions......often involving profitability........play a key role in shortages........"

And again, I ask...... can I get the folks making these "business decisions" to visit the floor of ANY cancer hospital to explain this phenomenon to the family of the person donned in the hospital gown lying in the bed?

BACK TO THE BUSINESS OF CHEMOBRAIN

Halle-friggen-lullia!


My google page, the one that distracts me from doing actual work no matter HOW HARD I try?


Let's get back to business.


The reason for the existence of this very blog.


My need for personal vindication and the absolute certainty I had that chemobrain is causing far greater issues for many more people than anyone can estimate.


And, I got the moves like Jagger and it goes like this:


According to this newly published study, breast cancer itself may be the cause of "measurable brain injury."  In other words, my chemobrain or my twitter @chemobrainfog may need to be adjusted to properly reflect that a breast cancer diagnosis in and of itself may be causing brain issues. 


@chemobrainfogboob?  As it is, I'm using far too many characters in the tweet world......


From Stanford University..... In case the link doesn't work...... Nah... this is worthy of a blog entry.  Any emphasis is MINE.  At the bottom of the page are links to every article in EVERY journal where I could locate the story until I got ummmm, distracted...... by Dancing With The Stars.


I AM a medical news junkie.  I got my fix last night.  Now, how to FIX it?

A neuroimaging study from the Stanford University School of Medicine has found that when asked to perform certain tasks, women who have undergone chemotherapy for breast cancer had significantly less activation of a part of the brain known to play a critical role in planning, attention and memory than did breast cancer patients without such treatment, as well as healthy women.

The research, published Nov. 14 in the Archives of Neurology, advances previous findings about the effects of chemotherapy and breast cancer on brain function. It provides “further evidence that primary breast cancer may cause measurable brain injury,” the study authors wrote, adding that women treated with chemotherapy experience additional brain abnormalities and cognitive difficulties.


The study also shows an association between breast cancer patients’ self-reported cognitive impairment and abnormalities in brain function. Among patients who received chemotherapy, complaints about their cognitive ability significantly correlated with lower activation of these parts of the brain, the study found.

“This shows that when a patient reports she’s struggling with these types of problems, there’s a good chance there has been a brain change,” said lead author Shelli Kesler, PhD, assistant professor of psychiatry and behavioral sciences. “Yet these women are often dismissed as imagining or exaggerating the problems.”


Kesler, whose research focuses on ways to predict which cancer patients might experience impairments, said it was important for patients and physicians to have an increased awareness of the issue — “not only to validate the patients’ experience, but to also increase the likelihood that they’ll receive proper, supportive services and treatments for their cognitive difficulties.”


The study involved 25 female breast cancer patients who underwent chemotherapy and surgery, 19 breast cancer patients who had surgery only and 18 healthy females who served as controls. Participants were screened to ensure they had no neurological, psychiatric or medical conditions known to affect cognitive function.


The researchers used functional magnetic resonance imaging to determine which parts of the women’s brains activated when they performed a card-sorting task that measures problem-solving skills. The researchers also used a questionnaire to assess patients’ perception of their cognitive abilities.


Kesler and her colleagues replicated previous findings by showing that cancer patients demonstrated significantly reduced activation in two parts of the prefrontal cortex, including one that is responsible for working memory, cognitive control and monitoring. In new findings, they showed that women in the chemotherapy group demonstrated significantly reduced activation of an additional region of the prefrontal cortex, which Kesler and colleagues describe as “potential neurotoxic brain injury,” and that decreased levels of activation significantly correlated with increases of the patients’ self-reported executive dysfunction.

“When women are reporting cognitive problems, there is a biological change that corresponds,” Kesler said.


Women in the chemotherapy group were also found to make more errors on the card-sorting task and take longer to complete it than healthy women and cancer patients who hadn’t had chemotherapy. “Cancer patients may have brain changes, but the changes don’t necessarily impact them functionally,” Kesler said. “But when you add chemotherapy to that, the changes are so severe that the patients can’t compensate for it anymore.”

Kesler’s next step is to conduct a longitudinal study of cancer patients during which researchers would target this region in pre-treatment brain scans and predict which women might be most vulnerable to cognitive problems.

Co-authors of the paper include Jamie Kent, PhD, postdoctoral scholar in psychiatry and behavioral sciences, and senior author Ruth O’Hara, PhD, associate professor of psychiatry and behavioral sciences. The work was supported by the National Institutes of Health.


Information about the Department of Psychiatry and Behavioral Sciences, which also supported this research, is available at http://psychiatry.stanford.edu/.




From Health Day

US News and World Report

Med Page Today

Abstract from publication

My Health News Daily

   

I MISS MY NANA

Since I normally don't post on the weekend and since this means lots to me, I'm leaving this up as my entry for Monday.  It needs to be posted on Saturday......November 13


If my brain has failed me in the math department, I will stand corrected..... 


Today, November 13, would have been my Grandmother's 100th Birthday.


She passed away exactly ONE MONTH before I began my journey in Cancerland with the first inkling of a problem on a mammogram.  Oftentimes during the beginning of this Cancer Crap, I remember thinking, "I am so glad Nanny isn't here to watch this."  I am the oldest grandchild, so yes, I AM special.....  


My grandmother was one of strongest women (if not THE strongest) I've ever known.  And it wasn't that she was my grandmother, it's just because she WAS THAT STRONG!


She passed away on March 17, 2006.


What follows is a eulogy that was written by me and one that the Catholic Church allowed me to read at the end of Nan's funeral mass.  

Today, it is with heavy hearts, that we bid a fond and sorrowful farewell, to a woman who has meant so much, to so many, for so long. At the age of 93, I remember laughing when my grandmother told me she was old. She wasn’t old in any of OUR eyes, but SHE was beginning to wonder why God still wanted her here. Nana, God wanted you here because none of US, was ready to let you go. I know he did it for us. And I thank him today, for the gift that you were to all of us in this life, and for the mercy he bestowed upon you, as you slipped painlessly and peacefully into his arms.


While we mourn her loss, today is a celebration of her life, of who she was, how she marched to her own drum, thumbed her nose at the dumb stuff, and above all, how she taught THREE subsequent generations, what really IS important in life.


All of the memories I cherish from my early childhood, are somehow connected to her. We all lived together on 87th Road and Laureen and I ALWAYS seemed to find our way Nan and Poppy’s apartment. It didn’t matter if she was getting ready to leave for work, or if she had just returned from a long day, we were greeted with hugs and smiles and given her undivided attention. Nothing was more important than her family.


And then there were the times my grandfather would just show up with a gang of buddies and within minutes, there was a feast on the kitchen table. She ALWAYS managed to do that, and always on a moment’s notice. No one was more important than poppy.


She endured heart wrenching pain when she was widowed, just as her life with my grandfather was really beginning. I can still remember the first time I saw her after Poppy died. The image of her walking through the door being steadied by my dad is one that is burned into my memory. Her vibrance was gone. I can still see how terrible she looked, how obvious it was that she had been crying for a very long time. I never felt sadder.


Yet, while she may never have understood his reasons, Nana never questioned God’s will. At the most difficult point in her life, she taught us all the truest meaning of faith, in its purest form. She was a survivor, a strong and determined woman, who continued to live a full and rich life. From her earliest days as a young girl, helping HER mom, who was widowed while pregnant with Nanny’s youngest brother, to her days as a young bride and new mom, taking my dad to church to serve as an altar boy, and over the course of many decades, she became the family caretaker. I will be eternally grateful that I had the opportunity to thank her publicly for all that she did, when my parents celebrated 50 years of marriage. Before my grandfather died, together, they took care of our young, growing family so my dad could finish school.


They helped my Aunt Carolyn and Uncle Joey start a beauty salon on Jamaica Avenue. And after Poppy died, Nanny carried on that legacy by herself for the next 40 years. As her own mother got on in years, she moved in with Nan, so that Nan could tend to her, until her death just shy of 100 years old. When Uncle Larry passed away, she moved in with Aunt Cathy to make sure her baby daughter would survive his untimely death. Somehow, she even became the caretaker of Uncle Mikey’s rather large Saint Bernard.


She was wildly protective of all us. More than once, I can remember her helping me, as I’m sure many of you can too, over some rather rough patches. When I was upset or frightened, she knew exactly how to provide comfort and support. She was the finest example of grace under pressure when she was forced to calm me as a ten year old, on my very first plane ride, when a certain someone, simply HAD to ask what would happen if the plane fell from the sky. “Whatever will be, will be,” she said and within minutes I forgot how scared I was, as she was singing to us, teaching us the words to Que Sera Sera.


If I was angry, she would manage to validate my feelings, and diffuse the anger at the same time. During those moments, she had this inclination to say things that one might not expect to hear from this petite woman who was getting on in years. She had some pretty colorful ways of expressing herself. And the same way she calmly transformed herself into Doris Day lovingly singing Que Sera Sera, Nan could just as easily turn into a fierce lioness, standing her ground fearlessly, ready to do whatever SHE thought was necessary to protect any one of us.


I still laugh when I remember her sneaking out back to have a smoke with the girls, at about 90 years old. When I asked my dad how he could possibly expect her to go outside to have a cigarette, he laughed at me. “She’s the boss,” he told me, “she can do whatever she wants, she won’t smoke in the house because of all the little ones.” That was the essence of nanny…. It was never about HER… it was ALWAYS about the welfare and the well-being of all of us, her children, her grandchildren and her most especially, her great-grandchildren. She truly was the epitome of selflessness.


Today, as much as it hurts me to say goodbye, I STILL remember the way she looked so adoringly at my grandfather. There was this sparkle in her smile, and a twinkle in her eyes, that I only remember through my tenth birthday. I know she lived happily, VERY happily, for these past forty plus years, that she found immeasurable joy in watching her family grow. But I know, too, there WAS this tiny hole that none of us could ever fill. Today, I am certain that the sparkle is back, that she is smiling down upon all of us, watching over each and every one of us, just as she promised. Protective to the very end, her words have brought me much comfort through these difficult days. “When I’m gone,” she told me during a conversation we had just a few short weeks ago, “don’t you EVER forget that I will be praying for you, for ALL of you.”


But above all else, and what comforts me most, is that I have NO doubt, her eyes are twinkling once again, as she is reunited with my grandfather, in the presence of God, for all eternity, after a lifetime of waiting.

I love you, Happy Birthday....

CHEMOBRAIN Strikes again.....  the editing is getting exhausting!  Saturday, November 13?  Not THIS year.... it was SUNDAY.  This is why I just laugh my way through everything!!!!

ONES AGAIN

It's GROUNDHOG DAY (plus it's the day after my birthday so with any luck, I will be sleeping off some expensive champagne, just because.......)  

And, It's Veterans Day and on a serious note:  Thanks from me, a truly grateful American, for keeping me safe.

NOTE TO THOSE ALREADY ENROLLED IN AOW:  PLEASE Read through this and email as many people as you have in your address book.  EVERYONE has a "breast cancer" person in their life.  In most cases, it's not more than TWO degrees of separation.  Most DO want to help.  Showing them HOW, may spur some growth and allow Dr. Love attain the goal of One Million Women.

  

Back to  11/11/11     The Ones, Round Two   (do I need to add this? round one was on 11/1/11)

If there is anyone who doesn't realize I changed my life because chemobrain forced me to do something.... the blog title should be a good hint.  My twitter name, too.

Chemobrain took me away to embark in Anew Direction because I could no longer perform in my inherited profession. If you have not been following along and are choosing to pop in and say hi, well, back at ya and:

"I'm glad you found me and welcome to the party in my head."

Today is 11/11/11.  The day after my birthday, ten days ago it was 11/1/11.  This is the stuff that amuses me.  Why? No clue. Today, however is The Day Of Ones.  By the time this is posted (and yes, it will be scheduled for 1:11AM just because), I'm sure there will be a blurb on every news outlet.  It's cute.

Today, Groundhog Day, as proclaimed by ME  11/11/11 is nothing more than a repeat of 11/1/11:

One Day We Will Be In Anew Direction

Yo, AM-Brain is asking a question.... Do you add a Part Deux to that?  If SO, Must you give Charlie Sheen a shout out??  W I N N I N G

(Listen up.  I can claim the days......If someone, somewhere was able to get November to be National Blog Post Month, WTF-are you kidding me..... seriously, you can't make this shit up and why do bloggers need an awareness month...... what nonsense, what stupidity and WHO comes about doing this anyway???)  Before I lose you by getting off topic, or by stating that this IS Groundhog Day, I want to make my point. Then, you can get lost (hopefully, here in some of my silliness) or somewhere far more entertaining.

In these past three months, although I had every reason to suspect that chemobrain is a BIG deal to MANY people, I think I understated its reach.  I can't back up my theory with scientific facts.  I can just see, as I already noted in a prior entry, how many places this blog is being read.  And, every time I "meet" a new person, I hear the same challenges.  And now, I'm hearing about people ten years past treatment still dealing with Chemotherapy Fallout.  I was "righter" than I thought when I was asked if there was an "audience" for a blog about chemobrain.

THIS is why prevention is the cure.  No one should have to be faced with choices to "mutilate."  No one should have to "burn."  And certainly, no one should have to choose to be "poisoned."  Most importantly, NO ONE should have to die.

HOW will we get where we need to be?  Now, that's a great question.  And, I have an even greater answer.  HOW is how.  HOW is a study that was launched by Army of Women.  HOW=Health Of Women.  HOW is an online study, a survey that will track participants over time.  You can click the link to the AOW page or you can read the "HOW?" page in the banner at the top of this blog.

I hope this blurb will encourage you to read about the study.  I know this study is being "relaunched"in the spring.  "HOW?"  you ask.....  "HOW do you know this??"  Oh, the doubters..... it's that crystal ball and the mind reading thing.... old entries but yes, I see the future.  I just know.  I have a toothache....  If you are new to this party, no, I'm not crazy..... that may be worth a read if you want a laugh at my expense.

Back to the point that I didn't want to stray from.... So much for THAT goal.....THIS is the really really REALLY important part.  Note to all:  This is me with a blatant bribe.  You will have to join the Army of Women in order to get the "Call to Action" when this is ready to launch in order to participate.

In the spirit of "fair play" there is a catch.  By joining you WILL get the emails on the current studies that need to be filled.  In the spirit of "why aren't we already at a million women" the studies are ALWAYS VOLUNTARY to join.  There aren't more than a two or three emails a month and the studies ARE NOT DRUG STUDIES.  I can't emphasize that enough.  Actually, either of those points.  Really, any of those points.

You read the email and decide if you are interested.  Your inbox is not going to be inundated NOR is your personal information going to be given to ANYONE.  AOW guards their data base as closely as Coke guards their recipe especially from Pepsi (FYI, I'm a coke person in case anyone cares).  And they are not "clinical trials."  They are research studies.  Those are two completely different things.  They are "quality of life" studies on survivors (does yoga help sleep, does guided imagery help chemobrain) and "information studies" on healthy women (does breast milk contain anything that may provide a clue, is something about shift work causing a problem).

Want in on the HOW study when it launches?  Do it now so you don't forget.  And one last thing.  Those seemingly "personal" questions like age and ethnicity?  A good database is only useful if it represents the ENTIRE population. Can't only have a bunch of middle aged white women.  (Group chosen as a joke because I'm poking fun at ME.....quintessentially middle aged and obviously in need of a birth certificate check to remind me to act my age, which BTW, just advanced one number within the past 24 hours). We may SEEM to be everywhere you turn, but we are not a representative sampling of the population.

NOTE TO ANY AUSSIES:  You have a similar group in Australia.  They are just starting out.  I met one of the women involved in this initiative at the Avon Pre Event.  Send the word out down under!

If you don't want to click the links, humor me and read the highlights??  Now I aks ya, HOW can you turn this down.  If I convinced ANYONE to join, please tell them "chemobrain sent me" .......

The highlights:

The HOW Study is the first ever online "cohort" study of an anticipated one million women. A “cohort” is a study that looks at a group of people over time, collecting data that can be analyzed to find the common risk factors or characteristics. The HOW Study will be looking at breast cancer risk factors in order to understand the cause of the disease and ways to prevent it.

and this is the really good part:

what, beyond treatment, leads to long term survival as well as what the real long term side effects of current treatments are. Finally, this will be the study that addresses the questions you've been asking: is there an environmental cause of breast cancer? Are fertility drugs and bio-identical hormones safe? And what about deodorant and underwire bras?

and typical of the philosophy of Army of Women, the control is YOURS:

Each module will be dedicated to a specific topic,  The modules will eliminate the need to ask every single question at once, which can be overwhelming for the user. Instead, the researchers plan to release a new module every two to three months. Each module should take about 15-20 minutes to complete.

Participants can choose to skip a module or to participate in all module