Glioblastoma Multiforme aka GBM

I have this and it does not define me.

My heros:

11/14  Lorenzo Munoz, MD | Rush

11/14  Dr. Sea Chen

11/14  Dr. Ho Myong 

Allow me please to use the words of others to define it for you.

11/14 American Brain Tumor Association
11/14 Cancer dot gov
11/14 Cancer dot net
11/14 Chris Elliott Fund End Brain Cancer
11/14 Cleveland Clinic
11/14 Duke University Preston Robert Tisch Brain Tumor Center
11/14 Hermelin Brain Tumor Center at Henry Ford
11/14 Fred Hutch
11/14 Massachusetts General Hospital
11/14 MD Anderson Cancer Center  Talk of cure
11/14 Medline Plus
11/14 National Brain Tumor Society
11/14 WebMD
04/15 Parietal Lobe injury

Read more about... Links, risk factors, odd whatever other stuff.
11/14 CMV link  Dr. C Cobbs
12/14 Wonder if sample was tested?
12/14 Collected report BTA


Concepts for my future:

11/14 The Cancer Genome Atlas
11/14 Clinical Trials
11/14 Musella
11/14 Novocure     news     11/14 Optune      more news

11/14 Affirmations
11/14 Grey Ribbons
11/14 Grief - in a good way
11/14 Support Harvard Health

Caregiver
1/15 Caring for a Caregiver
11/14 Hospice Fox Valley
11/14 Hospice American 
1/15 Dr Way

Planning
11/14 Delirum
11/14 Keeping the end in mind
11/14 SocialMedia Accounts

Inspirational tales
11/14   Cheryl                      11/14 John B
11/14  hswenson2             11/14 Team Jen
11/14  Heather Knies


Tales of others
11/14 Cancer Compass       11/14  Janis 
11/14  Jeff                             11/14 John

11/14 Ken                             11/14 Ryan
11/14   Susan

11/14 Organ Donation

“When you die, it does not mean you lose to cancer. You beat cancer by how you live, why you live, & in the manner in which you live” –Stuart Scott

12/14 Test News link

Radiation Dreaming

I still follow my blissful path of my Radiation treatment.  I do this as relaxation and to sooth a troubled mind.  Do I feel the cancer cells waking up?  Can I sense that they are active and reaching in to new areas of my brain.  Are the invading my mind?  Who knows.  Thinking about them does lead to distraction. This much I can confirm.

To combat the walking off the pier train of thought I get on my bed and assume the Radiation Treatment position. Arms to my side, thumbs hooked in my pocket, flat on my back and my head slightly tipped with my chin up.  I hear the echo of the mask being locked into the table. Pop. Pop. Pop.

I put on a memory soundtrack and replay the sensation of lying there while the machine whirs, rotates, and click clunks around me, my head, and those dead cancer cells.  There is a counterpoint melody, or perhaps mantra, playing now.  Stay dead.  Don't move. No where for you to go or grow.  The Chemo, like the lion tamer, cracks the whip to keep the dead cancer cells in their tight surgically established margin.

I remain this way for the next 15 minutes.  The time the real treatment took.  It is timed this way as it happened for days and weeks during June, July, and August.  I was in the eagle nest.  I was an eagle. I felt the thermals tempt me to fly.  I rode the wind through clouds of green and purple on days that were good.  On days that were not good the clouds were muted towards blue.  Always there were flashes at a certain machine transmission. Bolts of white.

When I'd learned that a Decorah eagle died my soaring was over from that tree top.  It was too sad to be there.  I began to travel the path at the Arboretum.  I'm just now realizing that I said travel rather than "drive."  I was still as an eagle and I was not on a thermal high in the air I was in flight.  My journey always took the same path.  This was the right side of the road from the gate, through the parking lots, along the lake and all the while I was seeing the trees and flowers as I saw them from the car. 

I would fly along the road path smooth as the breeze. Ever watchful of the vegetation along the way I experienced the greens and sunlight through thought more than sight. I was part of the place. My journey lies along that road. It soothes me. It restores me. It heals me.

I rouse back into my current reality refreshed and revitalized.  I've crushed that cancer right back where it belongs.  I am stronger. I am ready and eager to do more and be more. 

Haunted by my Hair

I am haunted by my hair.

May 2015

May 6, 2014 I had a craniotomy to remove a fair size growth in my brain left temporal lobe.



I was told to leave my hair be allowing what happened to happen.  Not everyone loses their hair during treatment, they said.  This is true.  In my case the hair that didn't come out allowed me cute hat fringe and a barrel of laughs.  Yes, also some tears.  The small stones can cause a stumble.




Mostly it fell out during chemo and and radiation.  The progression was slow and steady.  Handfuls of hair the result of a gentle hand smooth-through.

July 2014

Funny edge sections remained.
Every section of hair is short.

October 2014

 

From my clothing and laundry I often receive a visitor of my hair before.  A hair that is long. So long.

This ghost hair haunts me. It reminds me that even though it is just hair, it is part of how I identify myself. How I feel best who I am.   I'm Bev with long blond hair.  Until I look in a mirror.  Then I'm Bev in a dress up hat, or Bev with the scruffy fuzzy, maybe that is hair, shadows in odd places on my head.   No where is there a long hair on my head, yet they turn up. Haunting me with the past, teasing me that I'll live long enough to be that Bev again.  To have that long hair on my head and not just in my dreams or visitations. 

April 2014

December update. The process was painful.  The shock of learning who I am and presenting ME, just as I am, has been a growth experience.  People are accepting.   If they are freaked out by my look they were also polite.  Thank you if you extended me that kindness.  Hats and wraps are trappings as much as my hair.  I hid behind them. Hindsight laughs with me that a hat indoors is as "seemingly" out of place as a lady with a bald head.  When I was comfortable in the skin I was in, it just didn't matter any more.   Being alive. Breathing. Being.  That is where the true beauty resides.

I prefer my hair long, longer, longest.  I may never live to see the lengths I had attained. I still feel that I think better with my hair up; so I now think better with my thinking cap on.

The new growth is fast when I look back at the photos October to today.  

December 2014

Yes, I do still agonize, bemoan, mourn, and feel haunted by what was.  The important thing is that I do this as I move forward and embrace what is.

San Franscico in March

Amtrak California Zepher
http://www.amtrak.com/california-zephyr-train

Along the way:
http://www.railpassengerusa.com/routes/californiazephyrroute.php

Bus: The Embarcadero & Beach St, San Francisco, CA


http://en.wikipedia.org/wiki/San_Francisco#Neighborhoods

Hotel options:

Hotel Vertigo -- standard room with 2 queen beds

http://www.haiyi-hotels.com/hotelvertigosf/

http://www.frommers.com/destinations/san-francisco/hotels/872348#sthash.q2opQ1Fu.dpbs Movie tie in....

Union Square http://en.wikipedia.org/wiki/Union_Square,_San_Francisco 

Hotel Zetta -- standard room with 2 queen beds

http://www.viceroyhotelgroup.com/en/zetta

SoMa http://en.wikipedia.org/wiki/South_of_Market,_San_Francisco 

Hotel Metropolis -- deluxe room with 2 double beds

http://www.haiyi-hotels.com/hotelmetropolis/Nob Hill http://en.wikipedia.org/wiki/Nob_Hill,_San_Francisco

Handlery Union Square Hotel - 351 Geary Street, San Francisco, CA 94102

http://sf.handlery.com/default.aspx?pg=accommodations

http://www.argonauthotel.com/

495 Jefferson Street, San Francisco, CA 94109

- See more at: http://www.argonauthotel.com/#sthash.GqgjIKR7.dpuf

495 Jefferson Street, San Francisco, CA 94109

- See more at: http://www.argonauthotel.com/#sthash.GqgjIKR7.dpuf

ARGONAUT HOTEL     495 Jefferson Street, San Francisco, CA 94109

The Tuscan
http://book.bestwestern.com/bestwestern/US/CA/San-Francisco-hotels/BEST-WESTERN-PLUS-The-Tuscan/Hotel-Overview.do?propertyCode=05554

495 Jefferson Street, San Francisco, CA 94109

- See more at: http://www.argonauthotel.com/#sthash.GqgjIKR7.dpuf

To Do possibilities

Ferry
http://sanfranciscobayferry.com/

Laundry and Burgers a light packer dream!
http://www.tripadvisor.com/Restaurant_Review-g60713-d533138-Reviews-Brain_Wash_Cafe_and_Laundromat-San_Francisco_California.html

Golden Gate Park
http://sfrecpark.org/parks-open-spaces/golden-gate-park-guide/

Golden Gate Bridge
http://www.goldengatebridge.org/

Parks
http://sfrecpark.org/
http://aquariumofthebay.org/plan-a-visit/hourslocation 

Public Spaces
http://www.sfgate.com/politics/article/S-F-rolls-out-free-WiFi-in-public-spaces-5792159.php

http://www.localecology.org/images/popos_SF.pdf


http://blog.sfgate.com/johnking/2014/03/26/8-great-public-spaces-hidden-in-downtown-san-francisco/#photo-425870

Hop On/Hop Off Tour
http://www.sanfranciscoopencitytour.com/en/routes?route=4&gclid=CPLkvvaIrsMCFRRffgod34oA3w

• 
  
• 2 hr loop
• buses run every ~15 min.
• Stop at GG Bridge to cross on foot
• Stop at Golden Gate Park: CA Academy of Sciences
• Optional: Detour to Conservatory of Flowers
• Ride through Haight/Ashbury.
  • Phone number: 415-300-4555
  • Email: info@graylineofsanfrancisco.com
  • Main Location: Gray Line of San Francisco – 2627 Taylor Street – San Francisco, CA 94133
  
  

Cable Cars

Hyde St Cable Car line to Cable Car Museum

Hyde St Cable car from CC Museum to Powell & Market

http://www.sfcablecar.com/routes.html
http://www.cablecarmuseum.org/

Chinatown
http://www.sanfranciscochinatown.com/  

Opera House
http://sfopera.com/Home.aspx
http://www.sfballet.org/planyourvisit/opera_house
http://www.sfwmpac.org/operahouse/oh_index.html

Alioto's resturant
http://aliotos.com/ 

Buena Vista
http://www.thebuenavista.com/home/home.html

Franciscan
http://www.franciscancrabrestaurant.com/ 

Lori's Diner (Larkin at Beach)
http://lorisdiner.com/locations/ 
 
Pescatore
http://www.cafepescatore.com/ 

Mission
http://missiontour.org/sanfrancisco/

Winery 

Pier
www.pier39.com
 
Chocolate
http://www.ghirardelli.com/locations-events/special-events
flash your room key for a discount!

To Do Guide
http://www.sftodo.com/cable-car-san-francisco.html

http://www.sftourismtips.com/san-francisco-with-kids.html 

http://gocalifornia.about.com/od/casfmenu/ss/Things-To-Do-In-San-Francisco-With-Kids.htm

http://gosanfrancisco.about.com/od/thingstoseeanddo/tp/thingstodowithkids.htm

http://www.frommers.com/articles/6180.html

http://www.sanfrancisco.travel/article/visitors-guide

You look Great

You look great. I hear this quite often.  In my head it echos around with their unspoken "for a sick person" twist.  Really, there is something wrong in my state of Denmark.  The visible indications that say sick or dying are not part of who I am.  I can see that sick person in me.  She stands there clearly in the mirror.  Close friends and family see in my slower pacing, a more prolonged reply, and sadly a quicker snap to "please stop." 

I monitor my skin, my toes, my toenails, my eyebrows, my belly, my internal aches and pains against my mindful heart of yesterday and the day before.  When I write down things to remember they seem goofy the next day, but I also feel compelled to know how it is different.   Am I more, am I less, how am I different from the me I just was. Is the sick me showing for anyone to see?

I see saggier me.  I'm a little deeper in the eye socket, I'm heavier in the leg dragging.   None of it means that I am better.  It doesn't even mean that I am worse.  I am just different. It takes energy to be so self diligent and it seems so important.  It seems that it should be important.  My more rational mind knows that the detail isn't very valuable. What matters and will pay off is that I keep doing what I do. That I reach to do more. That I manage to keep it all straight.  That those around me feel that I am capable.

I am fighting to be better.  I strive to keep doing the things that define the she is better mold.  No, I don't look sick.  Yes, I do look like I'm going through this thing.  I actually said that tonight...  I've got this thing I'm going through...  referring to my head and walker grasping hands....  Yes, I have this thing.    I have it.  It does not have me.  Not yet and not while I can keep trying so hard.

All said I do have this thing. I do feel a wee bit sorry that I don't look sick enough for you, but not enough to give in and just be sick already. That s not in my playbook. I have daily reminders that the sick is poised and ready to spring.  When it does there will be one heck of a battle.  In the meanwhile I continue on with the daily skirmishes.  Pills now, pills at this alarm, pills at that alarm, do I need to grab one of those pills? Every pill is a reminder.  Every pill is a soldier going in to fight the fight.  Every assessment is a tactical maneuvering.  Together they hold up the appearance of not a sick person, but of a person fighting to stay alive. A person on full maneuvers. Me. Thank you for saying I look great, I feel great, too.  

Where we are at this moment

Do the thing you are doing....
Be mindful...
Be present in the moment...

Kairos  the special moments within time.   Savor this time.

All things you say to remind yourself to slow down and appreciate what you have. All the good that you have.  Maybe even the bad that is working on you.   Gosh, without my GBM diagnosis I'd have gone through this past summer much as I went through last summer.  Working, sleeping, driving to and from work, eating, bathing, reading, playing, loving, and never feeling that there was time enough to enjoy any of those things.  The schedule of what is next was always an engine driving my time.


A medical crisis refocuses your life.  Yes, mine is a family in crisis.  The rescue crews can do so much.  We cannot live in a state of crisis long term.  We will shore up the defenses and resources to regroup and maintain the best new definition of OK as we are able. I've had to work on coming to terms with the fact that happily ever after may be 6 more months. It might also be 6 more years.  It can be any time between or longer.  It could be a bus, tomorrow. We are on an uncharted road here....  how long, how am I, what's new are on a status update every 3 months, every 6 months... forever.  Well, for long as I have.

This past summer I had all the time in the world.  Well all the time I have left in the world ahead of me. We all did.  I just was told by the Dr. that statistically my time is limited. Sorry. Very sorry. Don't freak out. Go have fun. Be happy.  We will all do our best. Sure there were appointments to keep, work to do, food to eat, people to love, books to read....   but I had a new pace to follow towards accomplishment.

I was on healing time.  No, I don't look sick.  Unless you see my chemo and radiation bald head, unless you see me walk with my walker pulling my right leg along in what I've taken to calling my Igor stride.  You might see the 4 inch scar on my head... but only if I've been careless or find you trustworthy.

Confronting your last breath is not a common thought process throughout your life.  It is to be tucked away  for consideration when one is old and close to death. After you've lived a life filled with making memories and bringing your family to a place of their independence. I can imagine all the special life events I'll miss.  But I avoid going to that land of forlorn thoughts.

A sudden death of a young person is tragic.  So much potential gone.  So much life not lived. Experiences not enjoyed.  Everyone experiences the void.  My friends just lost their newborn. Two days of time shared after nine months of building expectations.  The death of an old person has the same measure of loss.  That person is just gone.  Memories are all that are left. What I've lived will only be remembered by those that have experienced it with me, read my stories, or as someone recalls an experience of mine.  There is a lot of chance involved in leaving a legacy that will last. Life is great and death just sucks.

Grab the good times and hang on as long as you are able.  Enjoy the wild ride.  Take comfort from love and pain as a reminder things could be worse.  Things will be worse.  Why waste now fretting over the many ways that could be true.  I can't wallow, expecting the worst everyday, for what could turn out to be a miracle life.  I can plan for the what if.  Work in anticipation of when that moment arrives.  It cannot be my focus.

Just as I work to see the good in people I work to see the good in this situation.  As a kid I wanted to grow up to be an architect, a city planner, , teacher, librarian. To have a career. To follow my passion. It was, I think, assumed that I'd grow up to be good.  To do good.  In this I have been a success.  This is the part that matters. It means something. The jobs I've held allowed me to perfect my doing of good deeds... they prepared me, provided experiences, learning opportunities, and skills necessary to take on the next task. I'm pretty well prepared for this new adventure.

I know I am well equipped.
My circle of friends and family enriches me.  The hold me up.  At the moment we are in a pretty rich place. 

Radiation

June 23 I started radiation and chemotherapy for my brain tumor. My GBM. Mine. I own it and it does not own me.  I have Doctors and tools to fight it.  I have sheer will power.  All it has is a blood source.  My blood.  My traitorous blood.

We have had many a good long talk my blood and I. In the dark of night, the radiation therapy room, in the car on long drives, we talk anywhere I can sit eyes closed and my vision turned inward. With my whole heart I have a confidence, a belief, that the marvels of medicine, the power of prayer chains and our talks have turned the tide.

Our talks have helped me find the power that is my core.  I am not afraid to be alone.  am not afraid to be strapped into a machine aiming radiation at my brain.  I am not afraid to swallow a pill of poison.  I've done this day after day, night after night, for six weeks.  I'll do it again. I need to.  I love doing something that kills that cancer that remained in me. Vengeful much? You bet.  That evil thing is fighting for me in a struggle to the death.  I know that life is the superior weapon.  Stupid cancer if it wins it also loses.

Monday I completed my six week armed warfare against my cancer and I used my blood as the weapon. I feel a void from the routine, from the time strapped into the machine, from the talks with my blood.  I've been adrift this week filling this void with noise.  Tonight I realize that my blood and I can still have our talks.  We need to keep a focus on this task called living.

I need to follow the path of bliss that I drove, floated, and soared through during the six weeks.  Eyes closed and strapped in I fought to be calm. I fought to breathe in with my "soft"and out with my "belly." As much as I wanted to block out the machine whir and ka chunk and thud thud through the dance that was my program I also needed to know we were in a routine.

When the routine was off in some way I had to work that much harder to focus. Temperature made a difference.  Feeling hurried. Being thirsty. Having a sore head. Losing my hair. These became barriers to the moment of bliss.  They made a difficult task that much more difficult.  "It is all about me," I joked one day.  Funny but true.  All that was there for me.  It was all focused for 20 minutes a day for six weeks to provide the tool and pathway for that radiation and that chemo to work with MY blood against that cancer that wants us dead.

I thought the focus of going to and taking was the doing thing that I needed.  It was what I mourned.  The passing of a process.  Today I embrace the experience for being a lesson.  It stunk keeping that schedule and feeling that messed up tired way.  I am glad that is over.  I'll pick up the discarded lesson and continue the focus. My talks with my blood about how we will overcome this stupid cancer.  I will walk that oath of peace in my mind.  It is well worn. It is comfortable and it is all about ME doing something.

Who am I

Who am I is an question for the ages.

Who  I am has been defined by the company I keep

Daughter
Granddaughter

Niece
Friend
Sister
Cousin

Volunteer
CoWorker
Mentee
Mentor

Aunt

Wife

Daughter in Law
Sister in Law

Dreaming

At a place. In a city I did not know. With people I knew.  In conversation with one friend we walked together. We were soon out the door and down the street at her car. She drove away and I turned to return to that place. 

I turned and I turned.
Nothing was familiar.  I was lost. 

Dream Me did not know that when you are lost you stay put.  Your loved ones will find you.  Dreaming I walked the city. Dream Me was driven with purpose to find where I belonged. 

Alone.
I turned and I turned.
Nothing was familiar. I was lost.
Dream Me dreaming about my new path.
 
At a place.  In the city I do know the nice nurse told me, "There is so much change right now, don't worry about that."   "That,"  being the topic of my question.  I am worried.  That is why I asked.  I plan. I prepare. I worry. I anticipate; so I don't fail.

I am so afraid of doing this wrong.
I turn and I turn.
Nothing is familiar. I am lost.

I have failed to stay put once I realized I was lost.

Dream Me is teaching dreaming me, to remember, that when you are lost you stay put.  Your loved ones will find you.


I turn and I turn.
Nothing is familiar.
I am lost.  But I am not alone. 

Timeline

Time stood still the other day.
There was before and then.

There was nothing beyond.

Everything
stood still
in that moment.

No plan
no map
no guide
no where to go
no getting away for a moment to think
and no way to go back.

tick
 tock
tick
 tock

the constant of a clock keeping pace
marking the moment
passing
time

yes
standing still and stopping time

illusions
delusions

time kept on the path.

This is happening.
I had just stopped noticing our forward movement

Time stood still the other day.
There was before and then.  

There is something beyond.

I run to catch up
I need to keep with the pace

I can do this.

I will do this.

Chart a course.
Pick the direction. 

In this change of direction place I've had practice.

Then it was difficult.
Now it seems impossible.
overwhelming
if I let it swallow me up

Then I had choices
even when it didn't seem like I did
mostly because I didn't like them
I wanted back and that was not an option

just like now
there is no going back option
this is happening

to me
to us
to all of us


Time stood still the other day.
There was before and then.

There was nothing beyond.
tick
 tock
tick
 tock

I can't see or guess
but I have hope and prayer

time does not stop
There is something beyond.

tick
 tock
tick
 tock

some moments
I can't hear it or I've just stopped noticing
the ticks and tocks
  even as they echo in my head louder than ever before

MRI   chop chop
CAT scan whoo whoo
and even in moments of silence
time marks itself with my own pulse

I do have choices
but at the edge if this chasm I am afraid
I have fear because every choice has the potential to be a fatal decision... ha. as if that mattered.

No room for do-overs 
it is now or never
time did not stop

tick
 tock
tick
 tock

it has been intensified

It is showing me the exit door
It is at the end of every hallway.


It always has been, but today, the hallways each seem so short.

my misery  attacks me in the hallway

tick
 tock
tick
 tock

my misery loathes company

tick
 tock
tick
 tock


it needs to be alone
to grow and breathe and take on a life of its one
it fills time

tick
 tock
tick
 tock

it ends time.

Time stood still the other day.
There was before and then.

There is something beyond.

Oh, thank goodness my hallways are crowded

I have serpas, so many, each with -ology as a last name.
I have friends and family all helping
to pull,
to push and prod me along.

They help to stretch the time

to fill moments with joy

they chase away misery and fear and helplessness.

I can do this
we will do this
it can be done

I can face those moments of hell in the hallway
because I know that the exit door is worse.

I'll stay for this party
we will slow that tick tock of time
I'll savor the moments and
we will make them stretch as far and as long as possible.

My timeline is elastic.

- BH 6/14/14

Summer Reading Task

Read at least one of each of the following...

1.   One of Shakespeare’s plays
2.   The biography of a historical figure 
3.   One book about a historical event or a period in history

• "Code Name Pauline" by Pearl Witherington Cornioley

4.   One “classic” novel (pre-1910)
5.   One “modern classic” (post-1910)
6.   One dystopian novel
7.   One young adult novel
8.   One nonfiction title re: science, medicine, or technology
9.   Something political
10. A graphic novel  

 as directed by this Article

The Leg Issue

In April I went on a long trip to New Orleans.  I have arthritis in my knee.  It slows me down to cautious and increases fatigue.  I had been working on increasing me walking stamina since the trip was planned in January.  I was ready for this. I asked for one concession from my mom, "A taxi from the station to the hotel, please."  She was in agreement. Phew.

The train, The City of New Orleans, was an adventure all by itself.  We had a wonderful sleeper room on the ground level and took our meals in the dining car. That car was 13 or so steps up a two turn steep stairway and a full car away. We made every meal and managed to NOT spill.  It did help that breakfast was during a stop in Memphis.  There was a beautiful sunrise. 

I was rested but had not slept much during the night.  Our car, perhaps the second back from the engine seemed to get knocked upon by a great variety of loud item as we cleared the track in the night.  I'm sure one was a skunk.  I remained in a state of wakefulness because I wanted to see as we crossed the Ohio River.  Leaving the curtain open,the bright lights from crossings; as well as every toot, toot, toooot for a crossing increased my chances.  It all worked.  I was able to watch the train cross.  The moonlight provided a shadow on the river.  It was incredible.

We arrived on Wednesday in time to explore a bit and have dinner.  Thursday was a rainy day so we headed out to nearby locations with our umbrellas.  It was easy to duck inside if the rain was too much.  Cafe and National Park locations were the highlights of the day.  At the Old Mint I took a fall at the entrance stairs, having slipped on the wet tile courtyard.

I laid in the puddle laughing about how wet and muddy I was.  A Segway tour was passing on the street.  I remained down having decided to NOT add my ass in the air to their tour.  Sore and wet I inched to a seat and remained seated for a log while.  My mom and nephew had plenty to observe.  Muddy and damp, I made it to the elevator and into the Jazz demo.  That night I began taking Aleve to help get me through the discomfort. My leg had developed a heaviness and felt to be asleep. We still had a lot of walking to do.  Friday was planned as ride the Streetcar so I could rest my sore knee better.

Friday was a wonderful day.  We rode to the end of the St. Charles line a couple of times. Lunched and enjoyed the part at Toulane. Two New Orleans blocks from the hotel my mom and nephew pulled way ahead of me.  I soldiered on and soon had to lean on the wall for support.  My leg was beginning to take on more sensation of being asleep. At the end of a wall, facing a long opening for a parking lot, I paused to make a plan.  I couldn't do it alone.  Then my leg began to dance.  Knee and thigh twitching, foot lifting. I held on to the corner of the building to save my life. I tried to hail a cab.  I was too far from the street.  I looked too much like a freak. All were full.  Nothing in New Orleans is out of place.

I was tired. Spent.  My leg was still dancing.  No one and nothing could help.  My mom and nephew were lost to me.  I was lost. My phone and 911 could help me.  Big things were wrong with a dancing leg.  I could not hold on much longer and if I fell it would really hurt.  Corner of the building parking lot and uneven tile sidewalk.  Nothing soft or safe about this place.  The operator answered and seemed to be trying to talk me out of the call.  Lady, I'm alone, unable to control my leg.  I need help.  I'm in this street. It is a one way street, coming from Conti.  I think they will see me I'm the one standing at the building with a growing look of panic.  But yes I will flag them down.

Seems like hours later I'm part of the wall that can't hold me and I can't lift my leg. I see my mom.  I see the ambulance.   I try calling and waving.  I want you both here.  My mom suddenly understands I need help.  She comes toward me and calls to the Ambulance.  My leg is no longer dancing but I can't lift it. I can cry. I've never seen my mom more worried than she is at the moment I tell her, "I can't lift my leg."

The decision is made to take me to the hospital.  All my vitals are good and there is a strong pulse in my foot.  Puzzled faces on everyone.  Four hours, blood clot ultrasound, and $125 co-pay later I am free to leave.  The only thing determined is that I don't have a blood clot.  I should follow up with my Doctor when I get home or come back if things get worse.  I can walk with a stiff leg using my hip to swing my leg.  Good to go!

Noises

Noises

my head is filled with noise
voices from now
memories from the past

reminders and recriminations
images and imagination filled visions

to sort the truth from fancy
the lies from fact

the solace that comes from finding a sound
the sound that matches my beat
the ebb and flow of this moment

my here and now

my hear and know

the simple change of a sound
a sight
a moment in time

creating new noise

memories

priceless
or painful
or both at the same time

my head is filled with noise

my mind struggles to make sense of the cacophony
the mess of who I am
what I've been and all I've experienced

real or imagined
I continue to become who I will be.

- BH 3/29/14

March 29, 2014 at 1:12pm from my facebook page.

Diagnosis and Prognosis

Diagnosis and Prognosis

These crappy words
Diagnosis and Prognosis 
fill my head with thoughts
I never want to think
but I do

"Don't freak out"  he said.
Easy to say
this new mantra
much, much, much
harder to believe

even now
weeks of healing later
"Don't freak out"  he said.
holding hands helps
sleeping helps

waiting is torture
I am poised
TO DO
it is who I am
I DO

now the doing
is JUST TO wait
how hard is that?
dream of vacation
or retirement

ha ha pun intended
along this dead end
will i see that
Diagnosis and Prognosis 
"Don't freak out"  he said.

So I don't freak out
entirely
I keep it at bay
but it leaks out
every so often

BHH 6/2/14

Ed's Trip to New Orleans

Ed went going on a trip.  He traveled on a train to New Orleans. Grandma took him on the adventure.  She has taken every grandchild on a trip during Spring Break of 8th Grade.  This year it is Ed's turn.  Aunt Bev  went with them.  Grandpa drove us to the train.


New Orleans is a city in Louisiana.  Louisiana is a state in the Southern region of the United States.  Ed lives near Chicago.  Chicago is in Illinois.  Illinois is a state in the Midwest region of the United States.

Tuesday
They took the train called the "City of New Orleans" from Chicago Union Station. http://www.amtrak.com/city-of-new-orleans-train/
They will sat in seats to enjoy the view out the window.  The train traveled over 900 miles. The trip took over 19 hours! Part of the time it was the dark of night. Ed went to the top bunk to sleep. Aunt Bev was reading.  Grandma was dreaming of all the good food. Here is a video of the train and a trip someone took in 2013. http://youtu.be/5bFVsUDuvh0

There were so many things to see.  Farm, cities, highways, rivers, woods, cars, people, and maybe animals.  Ed saw things change as they travel from North to South. Winter becomes spring. He saw similar scenery change when he went with Grandma, Grandpa, and George when they went to Florida to see Uncle Bud.


The train went the length of the state of Illinois.  It crossed the Ohio River and went across a short parts of Kentucky and Tennessee. Kentucky and Tennessee are states in the South.

Wednesday
Memphis is a city in Tennessee. We were in the dining car for breakfast in Memphis.  We saw the sun come up.  Elvis lived in Memphis in a large house he named Graceland.  http://www.elvis.com/  Ed looked for people that dress like Elvis.   Ed did laugh when his Grandma tried to sing like Elvis.  This boy is MUCH better than his Grandma. http://youtu.be/wYUeQ_k9exU

When the train got to the state of  Mississippi we were nearly there.  Louisiana, the next state the train will cross, is shaped like a shoe. New Orleans is near what looks like the toe. Here is a map of the trip. https://maps.google.com/maps?hl=en&tab=wl

When we got to the Train Station in New Orleans, Ed was looking for Grandpa and he really wanted to eat pizza. We took a cab to our hotel and then walked to dinner. Prince Conti Hotel – Standard room, 2 double bedshttp://www.princecontihotel.com/  We stayed in the French Quarter and walked nearly everywhere.


Thursday was a bit rainy. We took our umbrellas.
http://www.cafedumonde.com/  Eat a yummy treat called a Beignet?  A fried dough, called a fritter, and sometimes filled with fruit.  Grandma will not like going to this place.  She does not like the smell of coffee.

Friday
http://www.neworleansonline.com/tools/streets/
There are special streets in New Orleans.  Each has a unique look or focus.  We can walk and ride the streetcar to see several of them.  Life in New Orleans is VERY different from Chicago, Northbrook, and North Aurora!

Saturday

http://www.minitime.com/Preservation_Hall-New_Orleans-LA-attraction
New Orleans is all about jazz.  We have to go to hear some.


Sunday

• http://www.frenchquartereasterparade.com/ 
• 1PM : "The parade will begin at the corner of Canal and Bourbon Streets, continue down Bourbon Street. to St. Phillip Street, roll up to Decatur Street and conclude on Canal Street at the Astor Crowne Hotel."This would be a fun parade to watch.  Perhaps we should have Easter finery, hats and ties, to join in the celebration.
• At 4PM there is another parade, also in the French Quarter.  This one is HUGE!

Monday
http://www.neworleanscitypark.com/in-the-park/carousel-gardens We saw the sculpture garden behind the art museum and a Pirate Ship in a lagoon.



Tuesday

http://www.neworleansonline.com/tools/transportation/gettingaround/ferry.html
New Orleans is a city built below sea level. It is also a city built with water all around.  Seeing the city from the water will be a treat.


Wednesday We packed had breakfast and took a cab to get on the Train.

Thursday We made it home.

 











---

Aunt Bev has made a place of interesting things to do during the trip:

http://www.meyerthehatter.com/default.aspx   Buy a Straw Hat?


http://www.minitime.com/New_Orleans_Historic_Voodoo_Museum-New_Orleans-LA-attraction   This place will be like halloween.  The history of New Orleans is very rich with people from other parts of the world.



http://nationalww2museum.org/  A museum about World War II was mentioned by a friend when I said we were vacationing here. The Museum began as a D-Day museum.  The landing on the beaches was done with equipment that was built in the New Orleans area.  This museum will remind Grandma of her trip to France with Grandpa and Christopher.




http://www.steamboatnatchez.com/
This is another way to enjoy the city from the water.  Paddleboats were the main way people once used to travel up and down the Mississippi River.  Aunt Bev LOVES the musical Show Boat. She thinks that this would be a great way to spend a couple of hours.When we read the book at the library you said you wanted to go on a boat ride.

http://www.mardigrasneworleans.com/avenue-gallery.html  We will be in New Orleans after Mardi Gras, but everyone NEEDs to know about the connection.

http://www.auduboninstitute.org/visit/insectarium
Insects! how unusual. This is just for crazy fun.  Maybe if there is a rainy day.



http://www.neworleanswaxmuseum.com/index.html
The history of New Orleans all in one place; and all in wax.


----

I said Grandma would be dreaming of food. Here are some places we will go to eat.

http://johnnyspoboys.com/menus/po-boys/
We will have to have a sandwich, or two, at this place.  Don't they look yummy?

http://www.centralgroceryneworleans.com/
This another place to sample some special food. This website has photos:
http://www.urbanspoon.com/r/57/620391/restaurant/French-Quarter/Central-Grocery-New-Orleans


http://www.cookincajun.com/
Cajun cooking and candies are a tradition from Louisiana.  We need to get treats.  This might be a good place to buy things to bring home for the family.

http://www.auntsallys.com/
Grandma will drool over pralines.  This is another good treat place.

***

Kindle the app

I am enamored with the Kindle app on my phone. How handy to have my current read always. available. at my fingertips. day or night.

My public library Overdrive contract is a handy way to keep books coming.  The limit of only 5 books on hold is my only area of complaint. Much like my library catalog option I'd prefer to place a bunch of holds and then suspend several until my reading time is available.  Perhaps. one day.

Meanwhile, you'll find me off in a corner enjoying a book.... swiping pages right to left while tracking the %  read and minutes until the the end of the chapter.