randomness

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.

list

Donate  body
Cremation

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 odds.how 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 .

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.

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:
reulands
harners
ramondos
colonial
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 :
  cheetos
  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
  nuts
  salads:
  cookies:
  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

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.

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.

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.

Legacy organizations

Wounded Warrior Project http://www.woundedwarriorproject.org/

USO of Illinois http://usoofillinois.org/

National Brain Tumor Society http://braintumor.org/
American Brain Tumor Association http://www.abta.org/brain-tumor-treatment/treatments/ 

Batavia Interfaith Food Pantry   bataviafoodpantry.org/

Between Friends Food Pantry
http://www.kanecountyguide.org/index.php/component/cpx/?task=resource&id=116296&tab=1 

https://www.facebook.com/Sugar-Grove-Veterans-Park-119706691442971/ 

they sent a random donation  be like them  http://www.puckcancer.org/

Goodwin School Library
SGPL
OPPL
Lincoln School 

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

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

www.nami.org/Learn-More


Follow YOUR passion and legacy.

 

 

 

 

 

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
   RESEARCHING

• 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

Survivor

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

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.

Loss

Grief
Sorrow
Empty

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.


Braver
Stronger

A story and a book.

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.

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.