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.
Subscribe to:
Posts (Atom)