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."
Saturday, November 21, 2015
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.
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.
Movies
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"(1982)
"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)
"Hoosiers"
"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"
"Oliver"
"Overboard"
"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"
"Up"
"Walk the Line" (2005)
"While You Were Sleeping" (19
"White Christmas" (1954)
"The Wizard of Oz" (1939)
"Yentl"
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.
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 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/
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.
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
RESEARCHING
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
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
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
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.
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
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.
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.
Friday, November 14, 2014
Glioblastoma Multiforme aka GBM
I have this and it does not define me.
My heros:
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
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
Thursday, November 13, 2014
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.
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.
Friday, October 10, 2014
Haunted by my Hair
I am haunted by my hair.
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.
Funny edge sections remained.
Every section of hair is short.
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.
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.
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.
![]() |
| May 2015 |
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 |
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 |
Saturday, September 27, 2014
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:
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
Cable Cars
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
http://www.amtrak.com/california-zephyr-train
Along the way:
http://www.railpassengerusa.
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.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
SoMa http://en.wikipedia.org/wiki/South_of_Market,_San_Francisco
Hotel Metropolis -- deluxe room with 2
double beds
http://www.haiyi-hotels.com/Handlery Union Square Hotel - 351 Geary Street, San Francisco, CA 94102 http://sf.handlery.com/default.aspx?pg=accommodations
http://www.argonauthotel.com/
The Tuscan
http://book.bestwestern.com/bestwestern/US/CA/San-Francisco-hotels/BEST-WESTERN-PLUS-The-Tuscan/Hotel-Overview.do?propertyCode=05554
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
http://www.
- 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
Wednesday, September 03, 2014
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.
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.
Saturday, August 30, 2014
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.
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.
Saturday, August 09, 2014
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.
Saturday, July 26, 2014
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
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
Wednesday, June 18, 2014
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.
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.
Saturday, June 14, 2014
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
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
Sunday, June 08, 2014
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
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
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
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
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