Friday, November 22, 2013

Melissa's Memory Misses (again)



Hello fans and friends.  Today as I word process along I'm sitting aboard the Amtrak train heading from Chicago to the bustling metropolis of LaPlata, Missouri.  I LOVE the train.  There's more leg room than on a first class flight, it's way cheaper than other modes of transportation,  you can get up and walk around, there are no seat belts and there's a cool observation car. Oh yea, and you can also charge your phone right at your seat.  It's always interesting to chat with people on the train about where they're from and where they're headed.  I typically get asked the following question from frequent travelers of this particular route:   "Oh, you get off/on at THAT place?? What do you people DOOOOO in LaPlata??" You see, if you've never been there the LaPlata train station sits in a field of, well, nothing.    

The parking lot is made of gravel and the train station itself is a rather tiny historic building with OLD wooden benches (like two) and a restroom.  There's a ticket window but you can't actually buy a ticket there and frequently there is "no one home" at the window.  When you arrive in the evening there is only a single light illuminating the tracks. 


                                             The "Southwest Chief train numbers 3 & 4 originates in Los Angeles and finishes in Chicago.  My trek is always the final leg of the trip as I ride for either 2 or 5 hours depending on whether I am headed from LaPlata to/from Galesburg or Chicago. Those who ride the entire length find themselves on a 48+ hour journey through cities, villages, townships, hay fields, corn fields, cattle farms and rolling hillsides.  I actually think taking it from start to finish sometime sounds kinda cool.  Ill add that to my bucket list. 

Anyway, when this big train rolls into LaPlata with its desolate surroundings and 50 people get off/on it does cause a long distance traveler along the route to question the reason behind all of those people waiting in a field.  (Annual Station Ridership (2013) is 10,031). Once its explained that this is the nearest train station to Kirksville where there is not only a university but also a medical and dental school people usually just "get it" and they move on with chatter along other lines.  One of these days I'll have a little fun and tell them that our space ship is broken out there in the field and were here to take over the train and return it to our planet.

But that's not what this entry is about.

The reason I am returning to the corn field is because I have just left the ASHA convention, which was in Chicago this year. 
  
(ASHA = the American Speech-Language-Hearing Association). I have been to some fantastic ASHA meetings over the past 21 years and some not-so-fantastic ones.  There was the year we were in Seattle and due to weather our plane landed in Portland and they bussed us up North. The only problem was that the roads were covered in black ice and we slipped along white-knuckling it in a VERY dangerous fashion for HOURS.  After de-bussing at the Greyhound station in Seattle we stood in the POURING rain waiting for a taxi and upon arrival at the hotel learned that our rooms had been GIVEN AWAY.  Then there was the ASHA in Orlando where all of my jewelry was stolen from my room while we were out to dinner.  I have pictures of hotel security officers, Orlando police and city detectives crawling all over my room and pawing my undergarments in search of clues.  There was the time when we were returning from an airport after leaving convention (A three hour drive -- remember, we live in a corn field) and we HIT A DEER with the university van!  I could go on, as I'm sure there are other memorable trips.

But that's not what this entry is about.

While at the convention my BFFs and I were discussing who was currently reading what.  Two of them were telling me about a book entitled "Still Alice" written by a neuroscientist named Lisa Genova.  They tell me it's fiction but that the scientific facts about this middle aged woman's descent into memory loss reads like non-fiction.  Being that the author is a neuroscientist Im assuming she probably got this stuff right. (I would also assume she now owes me a kickback for plugging her book). Anyway, I'm contemplating shooting her an email and volunteering to be a case study for a future book.  A possible suggested title could be "Incoming CFCC chair loses her mind.......story at 11."  In January I will take over as the chairperson for the Council on Clinical Certification (CFCC) which is a position where one really should be in control of all of her faculties and most certainly should NOT look like a sweaty, deranged, crazy woman who loses personal items and then publicly comes unglued seeming to all others to be schizophrenic.  (Yea, who put THAT nut job in charge of anything important?!)

You see, I am starting to get REALLY concerned about my memory.  While at convention this year on day ONE of the actual meeting I lost my coat somewhere at the McCormick place Convention Center which square foot by foot is larger than most Middle Eastern countries.   
When I discovered it was gone, I was standing in an exhibitor booth mulling over the purchase of a book entitled "mindful eating" or something similar (an odd book to be at the convention unless somehow theres new research to suggest that those with or who work with individuals who have speech-language-hearing issues are somehow also over eaters......HEY, maybe THAT'S the problem here) and I dropped the book on the floor and ran out to the registration area.  Now, I was not this upset because it was a Prada coat or anything like that but rather because I hardly EVER wear a coat being in constant mid-life hot flash mode.  I was upset because if I ever HAVE to have a coat it was my garment of choice.  Not fancy, it was made of gray fleece and had the CMDS Truman logo on the upper side.  I can't just run right out and buy another one.  It was sold as a fundraiser for our student organization years ago and for some reason, I just loved it.  It could be tossed onto the dog hair-covered floor in the living room, lost in the cavernous cavities of my van, stuck under furniture, wadded up into a duffle bag or smashed in the back of the closet and it always looked the same.  Did I mention it was really really comfortable?

When I found it missing, I retraced my steps.  My day began with a walk from one end of the convention center to the other because the shuttle bus from the Hilton drops you off at one end (Lets say North) and the opening general session was conveniently (NOT) at the other (Lets say South) so off I went.  (Ben and Jerry were the key note speakers and I was not gonna miss that because they were giving out free ice cream so I made the long walk early that morning----- (hence my need for the mindful eating book but that's a blog for another day.) This was followed by a stop at three restrooms (to check EVERY STALL because I can't remember which one I used in ANY of the three of them). Picture me waiting in line along with 13,000 of my closest female colleagues from the professions not once but now TWICE because I was too embarrassed to stand in the middle of the lavatory and scream "Excuse me everyone, no need to stop what youre doing but anybody see a gray coat in your stall?"

From there I found myself back in the room I presented in earlier and later two more rooms (at opposing ends of the convention concourse) that I attended lectures in.  Thankfully I always sit in the back so I had not far to look as I crashed the other sessions happening in those rooms at that time.  I would have hated to have had to stand up, raise my hand as if I had a question for the presenter and then say "well Ive no idea what youre talking about not currently treating phonologically delayed children from the inner city and all……. I didnt actually drop in to hear you spin your yarns of expertise but rather to ask, do you see a Truman CMDS coat anywhere up there near you?  Like maybe behind the podium or curtain or something?

Following this I ended up at three different information kiosks, and then on to 2 different convention security officers and finally in two different lost and found "rooms."  Nothing.  Have I mentioned I was wearing boots with heels and NOT flats or tennis shoes?  Let's just say Im on the train SANS coat but WITH angry blistered feet at the moment.  I chalked it up to an unfortunate episode of forgetfulness, counted my blessings because it was NOT my IPhone or IPAD and forged ahead into the world without my beloved "go-to" coat.

Fast forward to the last day of the convention.  It was after lunch and I was exhausted.  Ask any SLP or AuD and they will tell you that the ASHA convention is exhausting!  I had my phone in my hand as I was walking from the poster sessions in the exhibit hall over to a meeting room in the connecting Hyatt hotel when I sat down near a fountain to rest and watch the show the fountain waters were dancing to.  When I stood up to leave, to my UTTER HORROR my phone was GONE!  Now people, this is where I completely lost my mind.  I DUMPED all of the contents of my purse and shoulder bag onto the floor of the walkway and began muttering to myself.  With each passing moment the statements I made under my breath grew in intensity and I began to chant things OUT LOUD allowing passers-by to hear my sentiments including phrases like "oh NO Lord, this CANT be happening to me again, why do you HATE ME SO MUCH?!?!   

(*This is where you please refrain from psychoanalyzing me over my catholic guilt issues......).

I literally had trouble breathing and was visibly shaking.  By the time I shoved all my crap back into my two bags and arrived at the first available ASHA info booth I was hyperventilating.  I was fanning myself with the convention program in one hand and clapping my other hand on the marble desk top and I am sure to all observers looking more than a little psychotic.  Did I mention on top of all this I was sweating?!  Large drops of sweat were falling onto the information booth counter.  I managed to tell the info help desk folks that I lost my phone and that the cover was pink.    I was seriously growing ever more hysterical as the attendant hung up the phone following each inquiry she made to other info desks across the convention center.  I felt a little more faint with every negative response she received from staff members on the other end of the line. No one had seen it.

It was then that "Gennith" who was one of the women staffing the booth became my hero.

She asked me if I had enabled the iPhone Finder option and I briefly remembered checking yes to some box somewhere at sometime indicating that indeed I DID want that option because it sounded nice but I had no idea what it meant.  She worked some kind of iPhone voodoo magic and asked me to enter my password on HER phone and *poof* there was a picture of the convention center and my iPhone icon.  Turns out I could then choose to have the phone send out an alarm, lock itself or delete all of its info right there from Gennith's phone.  I chose the "sound alarm" option and she told me my phone was now emitting a LOUD alarm noise which would have made me chuckle if I were not busy being psychotic.  It was then that another ASHA staffer suggested that Gennith perhaps walk WITH ME to find the phone since I quite obviously looked like I was on the verge of a nervous breakdown.  Luckily Gennith had much experience with her MOTHER and her iPhone (Okay, when did I fall into the category of grown peoples mothers?!)  as she often lost it as well.  In fact, her mother lives in an entirely different state than Gennith and she has to help her find her phone from miles and miles away.  I'm wondering how I can hire Gennith to be my personal "handler" now that I'm officially losing my mind. I'm also wondering if Alex's future is headed in Gennith's direction.

She walked me to the other side of the convention center using the map on the find your iPhone app.  As we were crossing the sky bridge she called my phone (which I kept telling her had the ringer off but being from a younger generation than I she understood something about these things that I do not) and lo and behold someone answered.   Unfortunately though, since we were in the sky bridge the call was dropped.  I was smack dab in the middle of an emotional roller coaster that I could not understand (I was fine it was found--I was not it was stolen, kind of thing) when we arrived at the end of the sky bridge, rode the escalator down and saw it sitting on a security desk outside the Hyatt entrance.  Just prior to this "Parrish" who was stationed at the info desk at the bottom of the escalator saw us coming and jumped up to assist Gennith who was clearly chaperoning an insane sweaty shaky incoming chair of an important ASHA council crazy woman to the other side of the hall.  Parrish and Gennith were there with me and I have never been more grateful to two young ASHA staff members in my life.   Seriously, the ASHA president needs to invite these two to some sort of ASHA party or something.  I found them to be VERY valuable to the association!

Just as they turned to take their leave one of my Truman colleagues appeared coming out of the Hyatt and said hey have you.........when I lost it.  I just sat down and cried.  The stress of losing two items at one convention just got the better of me and I had a full blown meltdown right there at the dancing water fountain.  Lucky for me, she has an extremely calming personality.  She sat by me and patted my back, handed me a Kleenex from her purse and amazingly had CHOCOLATE on her person that worked wonders.  I was so glad to have her appear that exact moment. 

I calmed down and moved on to sit in my next session (because I was actually hell bent on learning about how the current health care reform was affecting our profession) and I thought the drama of this years convention was over.

But as with many things in life so far, I was proven wrong.

I had requested a late check out this morning at the Hilton (for 1:00 pm) because my train was not scheduled to leave until 3:00 pm.  At 12:30 my husband called to tell me that the Bears stadium was being evacuated due to a tornado.  HUH?  At that moment I heard a gust of wind so strong that it rattled my hotel room window up on the 19th floor.  I LITERALLY grabbed every possession I had and SHOVED them into my two bags and began to run for my life half dressed toward the elevator.  In the frenzy of all of this I turned around when I heard a crack.......and realized I had stepped on my glasses.  Seriously???? 

Quite luckily I made my way down from floor 19 and sat out the weather in the main lobby with my new Hilton buddies awaiting directions to take cover in the downstairs ballroom if needed.  I needed these new friends because should we need to read any signage on the way to the disaster shelter I was in big trouble with the remnants of my vision assistance located nicely in my luggage in a crumpled mass of metal and pink plastic and not located squarely on my face.  I also needed them to tell me if my socks matched having run from the room only partially covered.

As it turned out, I remained safe though clearly shaken a bit by the last few days near disasters.  At the moment, Im enjoying the sunset out of the window of my train seat.   
We've nearly reached LaPlata where I'm sure someone will ask on my way out whether or not Im a farmer and how my crops fared this season. 

Nope, just midlife me trying to return to the husband, kids and university happy to have just SURVIVED another set of travel dates.  

Now if I can just remember if I drove myself or if I have a ride waiting once I arrive……
 

Friday, September 27, 2013

My life today: Gold vs Pink......for the kids

My life today: Gold vs Pink......for the kids:  Hello all, I gotta tell ya, October has ALWAYS been my favorite month.  I love the whole idea of October.........the color of changin...

Gold vs Pink......for the kids



 Hello all,

I gotta tell ya, October has ALWAYS been my favorite month.  I love the whole idea of October.........the color of changing leaves, the crisp feel of the air, the smell of bonfires.  Its a GREAT month. If you are a fan of Susan G Komen I am sure you are just as excited about the change in months a few days from now because as I am sure most every person knows, October is Breast Cancer awareness month.  The sister of Susan G Komen, both from Peoria, IL  (MY old stomping ground) has turned her sister's story into a world wide fund raising phenomena.  Seriously.  You can check out her story here:

http://ww5.komen.org/AboutUs/SusanGKomensStory.html

Last October I promised myself I would write this blog the next September if at all possible and it looks like I am just gonna get it in just under the wire.  Its September 27.

Last year, I was at my local pharmacy on October 1st.  Every pill bottle lid in the entire store had turned PINK over night.  Honestly.  It was like POOF, pink explosion.

Later in the month we were watching Monday night football.  Do you know what those big burly players went and did for the ENTIRE world to see?? They wore PINK socks.  Amazing.

Continuing on in the month the canvasing of pink continued.  Store owners all wore pink on a designated October day, college students rocked, jumped, ran and danced all hours of the night wearing pink to raise money for the cause, hospital gift shops turned EVERYTHING pink, flower stores increased the number of blush colored flowers for sale, pink ribbons were worn on thousands of lapels and pink car magnets were seen in every parking lot.

Watch for the color changes in a few days folks..............you CAN'T miss it.  Watch for that and then think of this.........

Susan's sister has done an AMAZING job at increasing awareness and raising money for breast cancer research and its REALLY important..........TRULY it is.  I have lost friends, students, family members and casual acquaintances to breast cancer.  It HAS to be stopped.

But with only three days left before the great transition to paint-the-world-pink month,  can we pause together for just a brief moment?

SEPTEMBER is CHILDHOOD cancer awareness month.  If you are a Facebook friend you have had to deal with me  posting a new childhood cancer fact every single day this month.  I won't apologize for it.  Is it depressing?  YUP.  Is it depressing ENOUGH to motivate you to do something to help the cause?  That's up to you.  But here's the thing.  Someone has to do the work because the parents of the kids who are sick don't have the time.  See, they're busy spending time with their kids while they are still around to hold.   (Although truth be told, most of the childhood cancer fundraising organizations have begun from the inspiration of a child!)

There currently is no Susan G. Komen of the childhood  cancer world because there are so many DIFFERENT kinds of childhood cancer.  And EACH one is worthy of fund-raising attention.  While September and the color GOLD have not swept the country (yet) in the same way pink has (next month), there are still some efforts worth mentioning.

 If you know our family you know that we lost an 11 year old kid to osteosarcoma 9 years ago. He was an amazing little athlete who continued to be active in his childhood sports world even AFTER they removed one of his legs.  Since his death I have looked at the world in a completely different way.  I have followed (literally) hundreds of kids online who have endured things no child should EVER have to endure just to feel good.....just to stay alive........just to play another day.

30 miles North of Peoria (remember, the home of Susan?) there lies a sleepy little town of 6,000 folks.....Chillicothe, Illinois.  My nephew and his family are from there.  I went to school there as a kid myself. In the 8th grade I (quite badly) sang the song "Tomorrow" from Annie in our annual variety show.  The last girl to sing that song in that school on that stage??  She wasn't in the audience when it was my turn.  Because she had died.  From cancer.  As a high school student.

Anyway,  in honor of this child, my nephew, his parents began a baseball tournament years ago. Over the years the tournament has grown and many of the townspeople turn out to volunteer, buy and sell tee shirts and remember this kid named Brad who loved the game but could no longer play because he lost his life.  This same community got together and formed a team to participate in the St. Jude run.  Last summer, this little community raised over $262,000 for St. Jude when all was said and done. THIS from a town of 6,000 people.

My nephew's sister, who was terrified of hospitals before his illness is now a nursing student. She wants to be a pediatric oncology nurse. My high school girlfriend's daughter is enjoying her freshman year at college where she plans to become a medical researcher.  Why?  To cure childhood cancer.  Today, my children's little Catholic school (of  only 78 or so students) offered the children the option of donating .50 cents to Cure Search in exchange for wearing jeans to school versus their uniforms.  My healthy 9 year old son Adam who forgot to bring his money to school found .75 cents on the ground and donated that. Those 78 kids raised $144.00. These are all important and meaningful steps towards catching the pink craze.  But its just a start.  We have SO FAR to go.

Below please find just SOME of the facts that have been gathered about childhood cancer.  Run the numbers. Do your homework.  And then ask yourself how YOU can begin to make a difference today.  I know I sound like an infomercial and I know the facts below are not easy ones to read.  But with attention to detail, I have every faith that in time September can catch up to October in importance. This blog has had over 4,500 hits since its inception.  If each person who reads it does one thing to help the kids survive just one day more I have to believe that in and of itself THAT can make at least a small difference. I will close now and go home (I'm at the office) to hold my kids.  See, I'm real lucky because I get to do that.  Once I am there and in that moment, I will say a prayer for all of the parents who cannot hold their kids tonight.  Because right now, its the LEAST I can do.

CHILDHOOD CANCER AWARENESS FACTS



*                 Each year approximately 13,500 parents will hear the words, “your child has cancer.” 

*                 Every day, it is estimated that 36 children are diagnosed with cancer.

*                 The average age of a child diagnosed with cancer is 6 years old. 

*                 Worldwide a child is diagnosed with cancer every 3 minutes.

*                 Childhood cancers are not related to lifestyle factors and little can be done to prevent them, unlike many adult cancers.

*                 Childhood cancer occurs regularly, randomly, and spares no ethic group, socioeconomic class or geographic region.
SOURCE: CCFOA.org

*                 Before they turn 20 about 1 in 300 boys and 1 in 333 girls will be diagnosed with cancer.

*                 More than 40,000 children undergo treatment for cancer each year.

*       
              Kids’ cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.

*                 On average, 1 in every 4 elementary schools has a child with cancer.  The average high school has 2 students who are current or former cancer patients.
SOURCE: CCFOA.org

*                 The number of diagnosed cases of children’s cancer has not declined in 20 years.
SOURCE: Cancer.gov

*                 Children’s cancer remains the number one cause of death by disease in children.

*                 One out of 5 children diagnosed with cancer will die (the survival rate is based on a “5 year survival” meaning that if a child survives 5 years after diagnoses he/she is considered to survive, but we know that many of these kids are dying after 5 years of treatment and therefore, more than 1 out of 5 children is dying of cancer.

Over a 10 year period, the number goes to 1 in 4.

*                 Every day 250 kids around the world die of a children’s cancer – that’s 91,250 kids lost to cancer worldwide every year.

*                 Three out of five children who survive children’s cancer suffer long term or late side effects such as infertility, heart failure, heart damage, secondary cancer, lung damage, hearing loss, growth defects.

Five kids a day die from secondary or other long term effects. 

*                 Even for kids who survive cancer, the battle is not over, because of the harsh treatments and the lack of effective treatments.  By the time they are 45 years old more than 95% of kids’ cancer survivors will have a chronic health problem and 80% will have a severe or life threatening condition(s).

*                 The average age of death for a child with cancer is 8 years old, causing childhood cancer victims to lose an average of 69 years of their expected life, a significant loss of productivity to society.

*                 Many adult cancers can be diagnosed early, but 80% of kids’ cancer has already spread to other areas of the body by the time it is diagnosed.
*                 Cancer symptoms in child – fever, swollen glands, enema, bruises, bone and joint pain, infections – often are suspected to be and treated as other childhood illnesses; hence the reason why most childhood cancers are in children less than 8 years old are in progressed stages and metastasized.

*                 Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually the work place, which can and does cause depression and feelings of isolation.

*                 One in 3 children diagnosed with cancer will not live out a normal life span. 

*                 Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limit the ability to read, do basic math, tell time, or even talk. 

*                 In the last 20 years, the FDA has initially approved only 2 drugs for any childhood cancer – and half of all chemotherapies used for children’s cancers are over 25 years old.

*                 $5.067 billion in tax dollars is given by the U.S. government to fund cancer research at the National Institute of Health.  Less than 4% of the entire amount is spent on research of childhood cancers of ALL types and there are 12 major types of childhood cancer and many subtypes. 

*                 $603 million was dedicated to research for breast cancer and $315 million just for lung cancer – both adult cancers.  For all kids’ cancer, only $208 million was dedicated to funding for search and clinical trials.

*                 It costs an average of $802 million in research and development to bring one drug to market.  From 1948 to 2003 the federal regulators approved 120 new therapies for cancer – only 15 of these had pediatric information on the labeling.

*                 Each child in the U.S. diagnosed with cancer receives approximately 1/6 of the federal research support allocated to each patient afflicted with AIDS. 

*                 Pharmaceutical companies fund over 50% of adult cancer research, but less than 5% for children’s cancer research. 

*                 Sadly, we learn that the American Cancer Society directs only approximately 1 cent to childhood cancer research for every dollar of public support.  That means for every $1,000 donated to the American Cancer Society, only $10 goes to kids’ cancer.  Unfortunately, The Leukemia and Lymphoma Society is not much better – only 2 cents is directed to childhood cancer research for every dollar of public support.  The following childhood cancer support groups direct at least an average of 80 cents of every dollar received to childhood cancer research and support.

*                 The average age of an adult when diagnosed with cancer is 67 and the average numbers of years lost to an adult who dies of cancer is 15; but the average age of diagnosis of a child with cancer is 6 and the number of years of life lost to cancer for a child that dies is 71.  This is why Dr. Eugenie Kleinerman, head of the division of pediatrics at Children Cancer Hospital at MD Anderson Cancer Center stated that “curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved.”  When children die of cancer they are robbed of growing up, marrying, having children of their own, creating something beautiful the world has never seen, or even discovering a cure for cancer. 
SOURCE:  StBaldricks.org

*                 Childhood cancers affect more potential patient years of life lost than any other cancer except breast and lung cancer.







    






Christmas 2023: A Reflection on a Collection of Moments

Dear family and friends, Hello and Merry Christmas from me to you. If I were going to re-invent myself as a social media influencer I would ...