Sunday, December 13, 2015


I had plans for this day.
A big part of which included play.
The roads were bad, what a drive!
So relieved to arrive and return alive
for the rest of today home is where I'll stay.

Saturday, December 12, 2015


Jazz. Smooth. Sultry. Sad. Soul.

Write not to record as much to fi

Acoustic guitar.  Judy collins. Carol king. Altusic.

Be open to an experience it try. Say yes.  Say ok.  No  is the end. Ends suck. Avoid ends unless you are making the end intentional. But do not hurt youself. It is strong to recognize you need help and it takes great strengt to ask. But ask and be appreciative.

reada boook that someone recommends or catches you eye.
50 pages. Again at a different place in your life.   The right time is powerful and worth the effort

Books give you friends to visit over and over from any place or time. Visit with them often.

Over chicken soup and rice. Or with a polary bear. Pop on top or  in a box.

Hayden Bethoveen pastoral.  St. Martin in the fields.
Write not so much to keep a record. More to help you sit and reflect and focus on your day life or experience

Love movies.

Stories of friends and pulling together for the cause.

Over coming what needs to be reduced.   Obasticals are opportunities for growth. Learn from them. Push yourself. Have a friend with you. Safety always. As in everything in moderation. Somewhere in time. Watch it
Spend time. Invest in you and enjoy a good thing ever time you can. 

Cotton candy at the fair. Pop corn late in the day
With root beer or dr pepper or Fresca and a good book movie or friend.

Find your chuck. A person to love you. Keep you safe as promised.   I always felt best in his embrace.  Arms or eyes. With him I could be vunerably. He was proud of my whims and warped sense of do do do. And let me and loved me. In spite of the times it hurt me. thid isyour passion others may not get it but you do.  know theperson the friends thefsmily the history  it is a giftto you hold it as precious respent and honor one another's deep self. if you ever feel fear. get out. being smart and safe trumps in blind and stupid

Regret nothing. Sad that I couldn't always protect those I loved from the pain and trials I opened them too.  Hope one day you appreciate that I always thought that I made the better decision when I had a choice.  Sometimes there are no good choices and you have to make the hopeful one. Let it rest and  rely on faith. The power of prayer and a good back up line.  You have that.  Love carries on. My friends and our family will be there for you.  This is comfort.  I've done all I can do for now. I long for and plan for contuing to do so. As long as I can

Read read learn feel love be brave be gold. See the small beauty see the big picture.  Keep your eyes wide open. Don't turn from bad. Seek solutions. Look for the good make the good you can  do good be good love one another

Smile dream be happy shed tears of joy. Sad tears bring snot. No one looks good in snot. Stop it . Please.


Donate  body
scatter where  You will visit or I will a value

No need to prolong anything. You don't need to worry. My body is done when it is done. Waiting won't change that.  We made it to here and beat the many times over unlike compound savings each odd is alone
each measures that probability if we are out we are out. it doesn't  make sense to het worke up on a better outcome focus on all we accomplishe celebrate that we our best AND got farther than often seemed possible

Stupid growths did not know that they killed themselves in the process of invading me.

The car slam was I think a step in shaking more g b m seeds all around  in that we were defeated from the get go.  Beyond our control.  Hate that it happened but can't find the best way to hate the fact that it happened.   

Be as careful as you can be but in the end you have to live for life to be good. Look for the good. Make the happy happen.  Be relaxed about stuff. 

Like corm boil it is over on Sunday night just get through it.  Everyone is doing what they can to follow the plan. Hot and tired as they are .if they are dancing their own tune. Address it at the next meeting.  The event works best when all work the group recognizes that each part contribute to the over whole  .  Every one comes to CB  with their own fun in mind.respect this. it works eventually they will value it in a tangible way taht makes more sense to you.  Good will who they share the message with that is WOM advertising and worth every effort at the price of doing a good event

My blog Is intended to be a help.  Please update from my draft emails. Maybe alison moore can help here. They are my thoughts and reflections on the life I enjoyed so much. Thank you fof sharing it with me. You surpassed yourself. Keep it up for me.please. our families need you whole my memory relies on you.  Coninue to keep me safe. Love me.
the to do list will never be dpne I continue to have a plan
Done and giving up are not part of the story. Not until my story  is too much to be good for you . 

It is also our story and our battle. 

You are a gallant hero. My prince.  My rock. Faithful companion.  Better than any lead in any book or movie I ever saw.  My own towel.Lover man .

Wednesday, December 09, 2015

Dec 2015 where we are now

Began Chemo and Radiation November 17 30 day cycle with Temodar for 42 times covering the non- radiation days as well.

In treatment this deep due to  New Growth visible in 2 MRI's Sept and Larger in October.  The new guy is  blood hungry and hangin over my Brain stem.  Of course I am a deviant from the norm.  Often rGBM is near the original site. Reaching out from remaining tissue.  Me? PNT  growth in the cerebellum as I  mentioned brain stem.  removing any surgicaloptionan any access is a greater risk for damage than fix.

Thankfully the original site seen with growth had cleared on Avastin which was a difficult journey.  bI Weekly IV treatments. 6 SCHEDULED in aug and Sept GOT THROUGH 5 then moved to the new plan.

Adding to the excitement Thanksgiving family stuff; making sense of it sorting things; consolidating life; journalling as much as possible.

The more dependent on others I become the more acutely I feel loss of self.My world is shrinking in so many ways. Who will get me water? Food? clothes? to t6he table? They don't even get how I like my straw or that I like certain spoons or forks.  even to have papertowels handy.

I understand expressions on faces from the past ALL THE PEOPLE I ENCOURAGED to just try. Sometimes the try is all used up. strog bravve tough old birds do carry on. In my darkest hour to date I came to accept that others join the freny because they want me around as much as want to stay around WE BATTLE togther. THIS IS OUR fight.

Thursday, December 03, 2015

Life Celebration

planning suggestion for my Life Celebration

Pat; my dad; Dr Abri; Daniel Leistman can help contact people
My facebook pages?
      elburn herald
      I'll work on a document to post here Conely would be helpful

pick a place like:
sg am legion

be nice to any one that comes  they made an effort. Please be gracious.
  - you can at least nod to them
         no need to get worked up
          they can keep their own Circus and monkeys  you DON't need or even want them
  - file under memory  how bizarre...

memory table for family and friend photos

Book or collect pages / cards something for  people to share a best memory andapage of  support  - make a book for each in the family when complete or a binder to add pages

Donation table this is a good set

have music - my playlists?  the inspiration on youtube  choices
  -dance or at least move something

movies from the blogger post on movie choices
 - funny! 
 - maybe Overboard , Enchanted, Annie, Ferris Bueller,

finger food / snacks :
  blt on mini cressents
  rippled chips /  brown dip
  carrots celery / frenchonion dip
 movie or mini candy = snickers, almond joy, bulls eye,  heath, payday, jr
   mints; smarties, skittles; swedish fish:  ask H and L
  ice cream topping bar

 root beer /Dr. pepper / orange

have Sam Glenn or someone Positive speak
maybe have a Mini entertainment time - the garbage can beats or Wiggles like singers  Ed liked both = Merrill or Sarah shoul remember who  Christy Sewall canhelp with Sam

Keep it fun and silly to keep making good memories PLEASE feel free to laugh and cry happy tears - being sadwill lead to snot AND  none wants that!  worry sadloss feel them fine, but find a way to represent how best I'd whisper in your ear and will be yelling in my heart to  find your  smile and your  passion

Tuesday, December 01, 2015

music AND pintrest twitter Swarm and Instagram
schubertdieschone mullerin

Pandora  stations

Swarm app:  Bev Hughes

A challenging experience

On a Facebook support support page my replies to a question :

Currently in radiation treatment and on steroids and keppra plus others. Surgery 5.2014 with r GBM 9/2015 .

I spend time just having to think how to do the next thing. Any thing. Shoes. Bathroom. Getting out of bed. Every step is a new step and requires an internal assist,step solid. Walk normal. That every one thing that was easy yesterday is that much harder today. Even easy last hour can become harder the next hour. Likely his focus is on the next thing. I speak in directives in part because I feel that a bark get action. If I have to explain one more time that I really prefer a certain fork and HATE the one they gave me I feel so frustrated and ungrateful. It is OUR struggle to figure out each new way of approaching getting it taken care of. I'm praying for you to be as strong as you need to be. Of course you didn't want any of this but taking care of yourself- enlisting others - controlling what you can .Do what you are able. Go for it! all IMHO given my life experience to date.
Like · Reply · 6 hrs

after sleeping I added to the message:

Beverly Holmes Hughes over looked the mouth part. It is a huge thing. Michael Jordan had it right the tongue IS part the go system. I've noticed that I walk with my mouth open and my tongue does rub on my teeth. that is drying. lozenges and mint flavor burns more than helps. having s dry mouth changes flavor and the ability to chew properly . until the rough raw feeling is fixed or lessened it is another distraction, drawing attention from other things. Soft food helped but that gets boring. Oyster crackers in the soup provide texture and are easier to eat for example.

Saturday, November 21, 2015

Always learning and appreciating

Through out this Battle with my Tumors I have been learning so much about them and myself.

I thought yesterday, applying skills learned when I was 4 or 5, that EVERY step on my path to date was a part of being prepared for the next step.  It is one story. It is told a thousand different ways and it springs to mind in a connection with familiar. I am so thankful for all that had a hand in getting me to this long over due realization...  If I was hard on you during the process please take my overdue appreciation -   as the better, teacher in you, not the smug full of your self power seeking vindictive embittered  witch (apologies to the good witches out there)  that you have the experience to view in a mirror. 

Back to the always learning.

I'm dealing with a kind of parasite.   I'll let you read the marine version of our relationship here.   It is a struggle to the death.  Ideally, his before mine.

Respect offered to people that perservere over unseen to the passerby obstacles or demons with in.  The list is a work in progress.  I recommend building a list of your own :)

Michael J.Fox- it is exhausting having a body rock or that "shaky palsy."

Wednesday, November 18, 2015

next step

In July the MRI showed two suspicious spots.  On Tuesday I had a one month follow-up MRI which shows growth in one of the spots and a third spot of growth. The spots show under contrast with is carried in the blood.  GBI is a blood hog.

Next Friday I begin a new drug therapy.  It is a every other week IV infusion. The first session is 90 minutes long. The slow pace allows monitoring of my reaction to the medication,
Avastin.  Avastin works to stop the tumor from growing by blocking the flow of blood that nourishes it.

Stopped before IV#6.  MRI showed continued growth only in the new area.

Starting Radiation and Chemo of the new area 11/17/15.
Much study and math indicate treatment will not overlap previous treatment.  Or so says the plan.   Going against the now named "Bloodsucker"     Full speed ahead.  I am not a sitaround an wait kinda person. Dedicated to making a difference, hoping, praying, and sharing the love.


My Favorites  list in development.

Making the list means that to watch once is never enough!


"The African Queen" (1951)

"All About Eve"

"Amadeus" (1984) 


"Annie" (2014)

"An American in Paris" (1951)

"Back to the Future" (

"The Bishop's Wife" (19

"Butch Cassidy and the Sundance Kid" (1969)

"A Christmas Story" (1983)

"Cinderella" (1997)

"Cinderella" (1950)

"Ella Enchanted"

"Enchanted" (2007)

"Ferris Bueller's Day Off" (1986)

"Field of Dreams" (1989)

"Finding Nemo"

"Forrest Gump" (1995)

"Gone with the Wind" (1939)

"Good Burger" (1997)

"The Goonies" (1985)

"The Grand Budapest Hotel" 

"Groundhog Day"

"Hairspray" (2007) 

"Holiday Inn" (1942) 


"I'll Be Home for Christmas" (19

"It Happened One Night" (1934)

"It's A Wonderful Life" (1946)

"The Jerk"

"To Kill a Mockingbird"( 1962)

"Life of Brian" 

"Lion King"

"Mary Poppins"

"Miracle on 34th Street" (19

"Monsters Inc."

"Monty Python and The Holy Grail" 



"Planes, Trains & Automobiles (1987)

"The Princess Bride"

"Raising Arizona" (1987)

"The Santa Clause"(1994) 

"Saving Private Ryan" (1998)

"Singin in The Rain" (1952) 

"Somewhere in Time"

"Sound of Music" (1965)

"Starman" (1985) 

"The Sting" (1973)

"Sunday in The Park with George"

"Toy Story" (1995) 

"Uncle Buck"


"Walk the Line" (2005)

"While You Were Sleeping" (19

"White Christmas" (1954)

"The Wizard of Oz" (1939)





Sunday, November 01, 2015

Who's on First

After my incision healed my neurosurgeon handed me off to the radiation oncologist and my chemo oncologist. They consult on my continued care. They contact the neurosurgeon when there has been tumor growth. From what I read and hear every case is unique for growth type, surgical options, and oncological interventions - no to mention our own reaction to any treatment.

GBM resection left temporal lobe 5/14, radiation and temodar, 
My chemo oncologist continued temodar 1 week in 4 then 7/15 MRI revealed suspicious spots 8/15 switched to Avastin every 2 weeks for 5 times. 

9/2015 MRI showed 1 set of spots gone the spot in my cerebellum has grown. In consultation for new plan radiation and chem.... 

I also see a neurologist he assesses my mobility and mostly treats my leg nerve damage symptoms present from point of initial hospitalization 5/14.

Thursday, October 29, 2015

Legacy organizations

Wounded Warrior Project
USO of Illinois

National Brain Tumor Society
American Brain Tumor Association 

Batavia Interfaith Food Pantry

Between Friends Food Pantry

they sent a random donation  be like them

Goodwin School Library
Lincoln School 

Park bench - take time to commune with nature and listen to your inner self.

Improving the lives of others:  Animal, human, oppressed,  young or old, currently in Crisis.

Follow YOUR passion and legacy.






Sunday, July 19, 2015

GBM and Clinical Trials

My last two MRIs have been at 3 month intervals and my next one is in 1 month.  Unfortunately the MRI from Monday shows two suspicious new spots in my brain.  They are removed from the original tumor location and are too hard to evaluate through the recent MRI images.  In one month a new MRI will hopefully show their status: growing or staying the same. 

They are most likely radiation narcosis.  That is a bad side effect of the 6 weeks of radiation treatment I had in 2014 during June and July. This is a problem by itself and one of the mixed blessing of still being alive...  think simply that the cure can kill you if the disease didn't get you first. Simply living in the uncharted waters of the place called beating the odds. Sorry about the poor or crass  bedside manner but I do know how to smile through tears!

If the MRI is inconclusive they will order a MRS which is a new test for me.  It is, as I understand, like an MRI with a different contrast agent.  This agent can read the chemical nature of my brain and of the spots to compare against what they know how GBM displays. The least likely, but still a reality, option would be surgery as the Doctors say the true story is in the tissue.  The new spots are deeper in my brain, so to avoid surgery would be best!

At this point we continue with the chemo because it IS showing success in keeping the original growth area from showing any new growth. Round # 13 begins July 26th.

Cousin Steve is a planner.  He had sleeping space ready for us at the time of diagnosis.  A university by him is a leader research center and Steve is advocating not specifically for us to come to his area, but for me to get the best possible care and odds out there.

Getting the ducks in a row.  This is MY list meeting criteria I decided as I was searching. Likely not the best list. Likely not the list of the best.  The list of places that spoke to me. Funny in that heart breaking way with the initial diagnosis the discussion of clinical was "best for when traditional methods fail."  Now, a year later, it seems that some choices along the road will rule me out.  Story of my life!

American Brain Tumor Association research link

  • New Drug Development and Repurposed Drugs
  • Targeted Therapies, Signaling Pathways, Gene Expression
  • Personalized Medicine
  • Imaging
  • Vaccines and Immunotherapy   
National Brain Tumor Society Raising Awareness

Musella Foundation Tracking Clinical Trials

Cleveland Clinic  University Hospital
Duke University Robert Tisch Brain Tumor Center
Henry Ford Hermelin Brain Tumor Center
Mayo Clinic Clinical trials
MD Anderson University of Texas
Rush Clinical trial
UCSF  Clinical trials

Friday, June 05, 2015


I was wearing a Survivor button when Liz completed the 5K. It made her sad.

Tuesday, April 28, 2015

One year later

I'm in an anniversary period. One year ago 4/18 I had the episode on the street in New Orleans and an ambulance trip to the emergency room.  I was released with a "nothing to see here, crazy lady" dismissal. I returned home, saw my primary physician and considered I was dealing with a leg injury of some type.  The next week I'm in the ER with a very patient and persistent Dr. David M. Sanchez, MD, at Presence Mercy, and several x-rays, tests, CT, and an MRI the possible cause was identified. I spent the night in the hospital awaiting transfer to a place with the expertise to complete the diagnosis and treatment.  I have a brain tumor.

At Rush-Copley I was further evaluated and seen by Dr. Munoz.  Full diagonosis is made only from live tissue he said... surgery was scheduled because tumor or cancer it had to come out.  The growth and swelling were the cause of my leg malfunction.  It had been overloaded with the wrong messages or by brain couldn't decipher what it was saying as logical.  Major communication malfunction.  Or as the neurologist, Dr. Brian O'Shaughnessy, eventual explained it I was having localized seizures. I still experience the muscle movements during times of extreme tiredness, distress, stress, anxiety, or on a whim.

The surgery and the treatment with radiation are in the past.  I am still in contact with the surgeons office as they review each MRI.  I have 6 month follow -up visits with the radiation oncologist, Dr. Sea Chen, allowing him to record the over time effects I display as a result of the radiation exposure.  I love that I've remained alive long enough for the cure to show damage!  Talk about collateral damage from the war on the "intruder."  I love that image.... my brain cancer, the intruder, is under constant attack.  I have Battle Buddies and we fight for my continued good health and the death of the cancer!

I take my chemo for 5 days each month.  I keep the bottles in a bag that admonishes the pills to get out there and "KILL CANCER."  I raise a toast to their success as I swallow them down.  I've kept the labels from their predecessors in that bag.  They have faced the enemy and kept us at stable status for coming up on ten cycles.  My process of visualization takes them through my body to the battlefield.  Staying calm, focused, and alive.  This is my mission.  My goal my life.  I still have a lot of sunsets and sunrises for collect and memories to imprint on the lives around me.  A year later the possibilities seem better than ever.

Sunday, January 11, 2015



I should have....
Why didn't I...

I want to tell you...

I think into the void that was once you.
My anchor. My standard bearer. You.


A story and a book.