I had plans for this day.
A big part of which included play.
The roads were bad, what a drive!
So relieved to arrive and return alive
for the rest of today home is where I'll stay.
Sunday, December 13, 2015
Saturday, December 12, 2015
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.
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.
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
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 .
Done and giving up are not part of the story. Not until my story is too much to be good for you .
It is also our story and our battle.
You are
a gallant hero. My prince. My rock. Faithful companion. Better than
any lead in any book or movie I ever saw. My own towel.Lover man .
Wednesday, December 09, 2015
Dec 2015 where we are now
Began Chemo and Radiation November 17 30 day cycle with Temodar for 42 times covering the non- radiation days as well.
In treatment this deep due to New Growth visible in 2 MRI's Sept and Larger in October. The new guy is blood hungry and hangin over my Brain stem. Of course I am a deviant from the norm. Often rGBM is near the original site. Reaching out from remaining tissue. Me? PNT growth in the cerebellum as I mentioned brain stem. removing any surgicaloptionan any access is a greater risk for damage than fix.
Thankfully the original site seen with growth had cleared on Avastin which was a difficult journey. bI Weekly IV treatments. 6 SCHEDULED in aug and Sept GOT THROUGH 5 then moved to the new plan.
Adding to the excitement Thanksgiving family stuff; making sense of it sorting things; consolidating life; journalling as much as possible.
The more dependent on others I become the more acutely I feel loss of self.My world is shrinking in so many ways. Who will get me water? Food? clothes? to t6he table? They don't even get how I like my straw or that I like certain spoons or forks. even to have papertowels handy.
I understand expressions on faces from the past ALL THE PEOPLE I ENCOURAGED to just try. Sometimes the try is all used up. strog bravve tough old birds do carry on. In my darkest hour to date I came to accept that others join the freny because they want me around as much as want to stay around WE BATTLE togther. THIS IS OUR fight.
In treatment this deep due to New Growth visible in 2 MRI's Sept and Larger in October. The new guy is blood hungry and hangin over my Brain stem. Of course I am a deviant from the norm. Often rGBM is near the original site. Reaching out from remaining tissue. Me? PNT growth in the cerebellum as I mentioned brain stem. removing any surgicaloptionan any access is a greater risk for damage than fix.
Thankfully the original site seen with growth had cleared on Avastin which was a difficult journey. bI Weekly IV treatments. 6 SCHEDULED in aug and Sept GOT THROUGH 5 then moved to the new plan.
Adding to the excitement Thanksgiving family stuff; making sense of it sorting things; consolidating life; journalling as much as possible.
The more dependent on others I become the more acutely I feel loss of self.My world is shrinking in so many ways. Who will get me water? Food? clothes? to t6he table? They don't even get how I like my straw or that I like certain spoons or forks. even to have papertowels handy.
I understand expressions on faces from the past ALL THE PEOPLE I ENCOURAGED to just try. Sometimes the try is all used up. strog bravve tough old birds do carry on. In my darkest hour to date I came to accept that others join the freny because they want me around as much as want to stay around WE BATTLE togther. THIS IS OUR fight.
Thursday, December 03, 2015
Life Celebration
planning suggestion for my Life Celebration
Pat; my dad; Dr Abri; Daniel Leistman can help contact people
My facebook pages?
elburn herald
I'll work on a document to post here Conely would be helpful
pick a place like:
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
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
Tuesday, December 01, 2015
music AND pintrest twitter Swarm and Instagram
https://en.wikipedia.org/wiki/American_art_song
schubertdieschone mullerin
https://www.youtube.com/channel/UChIlkSIQEMGJthWXMToKeMA/playlists
Pandora stations
https://twitter.com/BeAReader
https://www.instagram.com/bevknows/
Swarm app: Bev Hughes
https://www.pinterest.com/beareader/
schubertdieschone mullerin
https://www.youtube.com/channel/UChIlkSIQEMGJthWXMToKeMA/playlists
Pandora stations
https://twitter.com/BeAReader
https://www.instagram.com/bevknows/
Swarm app: Bev Hughes
https://www.pinterest.com/beareader/
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.
Currently in radiation treatment and on steroids and keppra plus others. Surgery 5.2014 with r GBM 9/2015 .
I spend time just having to think how to do the next thing. Any thing. Shoes. Bathroom. Getting out of bed. Every step is a new step and requires an internal assist,step solid. Walk normal. That every one thing that was easy yesterday is that much harder today. Even easy last hour can become harder the next hour. Likely his focus is on the next thing. I speak in directives in part because I feel that a bark get action. If I have to explain one more time that I really prefer a certain fork and HATE the one they gave me I feel so frustrated and ungrateful. It is OUR struggle to figure out each new way of approaching getting it taken care of. I'm praying for you to be as strong as you need to be. Of course you didn't want any of this but taking care of yourself- enlisting others - controlling what you can .Do what you are able. Go for it! all IMHO given my life experience to date.
Like · Reply · 6 hrs
after sleeping I added to the message:
Beverly Holmes Hughes over looked the mouth part. It is a huge thing. Michael Jordan had it right the tongue IS part the go system. I've noticed that I walk with my mouth open and my tongue does rub on my teeth. that is drying. lozenges and mint flavor burns more than helps. having s dry mouth changes flavor and the ability to chew properly . until the rough raw feeling is fixed or lessened it is another distraction, drawing attention from other things. Soft food helped but that gets boring. Oyster crackers in the soup provide texture and are easier to eat for example.
Saturday, November 21, 2015
Always learning and appreciating
Through out this Battle with my Tumors I have been learning so much about them and myself.
I thought yesterday, applying skills learned when I was 4 or 5, that EVERY step on my path to date was a part of being prepared for the next step. It is one story. It is told a thousand different ways and it springs to mind in a connection with familiar. I am so thankful for all that had a hand in getting me to this long over due realization... If I was hard on you during the process please take my overdue appreciation - as the better, teacher in you, not the smug full of your self power seeking vindictive embittered witch (apologies to the good witches out there) that you have the experience to view in a mirror.
Back to the always learning.
I'm dealing with a kind of parasite. I'll let you read the marine version of our relationship here. It is a struggle to the death. Ideally, his before mine.
Respect offered to people that perservere over unseen to the passerby obstacles or demons with in. The list is a work in progress. I recommend building a list of your own :)
Michael J.Fox- it is exhausting having a body rock or that "shaky palsy."
I thought yesterday, applying skills learned when I was 4 or 5, that EVERY step on my path to date was a part of being prepared for the next step. It is one story. It is told a thousand different ways and it springs to mind in a connection with familiar. I am so thankful for all that had a hand in getting me to this long over due realization... If I was hard on you during the process please take my overdue appreciation - as the better, teacher in you, not the smug full of your self power seeking vindictive embittered witch (apologies to the good witches out there) that you have the experience to view in a mirror.
Back to the always learning.
I'm dealing with a kind of parasite. I'll let you read the marine version of our relationship here. It is a struggle to the death. Ideally, his before mine.
Respect offered to people that perservere over unseen to the passerby obstacles or demons with in. The list is a work in progress. I recommend building a list of your own :)
Michael J.Fox- it is exhausting having a body rock or that "shaky palsy."
Wednesday, November 18, 2015
next step
In July the MRI showed two suspicious spots. On Tuesday I had a one month follow-up MRI which shows growth in one of the spots and a third spot of growth. The spots show under contrast with is carried in the blood. GBI is a blood hog.
Next Friday I begin a new drug therapy. It is a every other week IV infusion. The first session is 90 minutes long. The slow pace allows monitoring of my reaction to the medication,
Avastin. Avastin works to stop the tumor from growing by blocking the flow of blood that nourishes it.
Stopped before IV#6. MRI showed continued growth only in the new area.
Starting Radiation and Chemo of the new area 11/17/15.
Much study and math indicate treatment will not overlap previous treatment. Or so says the plan. Going against the now named "Bloodsucker" Full speed ahead. I am not a sitaround an wait kinda person. Dedicated to making a difference, hoping, praying, and sharing the love.
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.
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.
Bus: The Embarcadero & Beach St, San Francisco, CA
http://en.wikipedia.org/wiki/San_Francisco#Neighborhoods
Hotel options:
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
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
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.
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
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