2009

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Thursday, December 31st, 2009

New Year’s Eve 2009

Spending New Year’s Eve alone as well.
Like Christmas.
alone.

Had two Friends ask what I was doing
After I asked them
And then felt bad
or trapped
when I said that I would be
alone
and didn’t know what to say or do
so came the
“obligatory” invites
to join them
in their festivities
that did not include me

One Friend – an old Friend from high school and his wife
Already planning to celebrate together, privately
Offering to include me
beforehand
How kind to care
I’ll pass, Thank You.

The other Friend – a Family celebration
She has just gone through surgery
And still in pain and disabled
Offering to include me
Despite her own struggles
How kind to care
I’ll pass, Thank You.

The obligatory comment from my Mother
Wish you were here..
but not
don’t worry about your dogs
just come be with us.

Nothing else
No party
no gathering
no small get-together
Nothing

No one should be
alone
at this time
One should be with Family
or Friends
Should be.

Not the Holiday I thought I would be having
Not the way that was planned
Not the way that was planned with another
Broken all around.

Still sad
but getting used to it.

Bring in 2010,
It has GOT to be better than 2009.

But then I said that about 2008 into 2009
and it just got worse.
Much worse.

I’m scared
and alone.

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Posted in Emotions, sadness, scared, Special Days, tired | 1 Comment »

Wednesday, December 30th, 2009

UPDATE #5: Its Your Health Radio Interview

I’ve been so excited about the radio interview I did yesterday on “Its Your Health” radio. I know that it was rescheduled several times, so the actual occurrence kinda “got away” from some people. I’ve been excited cuz Lisa Davis said that she would be sending me an mpg of the interview asap, but then I got an email from her which informed me of More technical difficulties! I Swear, I have Crummy Luck ~sigh~

“Hi Denise,
Thanks again for an awesome interview. For some reason when the show was taped, my voice wasn’t recorded! I am going to have to fill in the questions and edit them in! I will do this over the weekend. What is up with all of the technical problems!! Oh well. Thanks for your patience. I will find us another date for a second interview as soon as I can. Best, Lisa ”

She is Thanking ME?? Wow.

Thank YOU, Lisa Davis!!

Thank You…

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Posted in appreciation, Emotions, Generosity, Getting The Word Out, Special People | No Comments »

Tuesday, December 29th, 2009

Radio Interview, Its Your Health – Done!

The interview on “Its Your Health” radio was this morning.
A few minutes ago.
Wow.
The time flew
and there was so much I didn’t get to say.

Information that I wanted to share.
Information about my situation.
Information that I have gone through
Information that may help others.
.

My monthly medical bills – depending on what tests I need done – are between $15,000 and $17,000.
Yes – Per.Month.
The cost for the 5 medications that I am on is almost $15,000 per month
Monthly infusion and blood tests – tack on an additional $400.
PET / CT scan adds $1,200 every 3 months.

With the PAPs (Patient Assistance Programs) that I am qualified for, my monthly medicine bill goes “down” to $4,500, plus the cost of the tests.

Not easy for a currently unemployed temp secretary who is doing it all alone…

I really wanted to touch on the PAPs – Patient Assistance Programs. These are SO Important!! These are “offered” by the drug companies for people in need – that would be me. If you are in need, PLEASE contact the drug company and ask if there is a Patient Assistance Program that you would qualify for. Most drugs have some form of a PAP.

When you go for appointments or tests, Be Sure to tell them your story – that you have no insurance, that your insurance doesn’t cover this or that or whatever. Most medical facilities offer discount rates for people in need.

As I said – now is Not the time for pride.
Ask for help.

There are people out there who WILL help you.
People who Want to help.
Regardless if you are a precious toddler, a young adult, or – like me – an “old fat gal”.
People Will Help.

I am here, asking for help.

I have gone through my savings and the small inheritance I got from my Grandfather ($30,000) to purchase a home. My own home. My first home.
Gone.

Now I am dependent on fundraisers and donations.
The kindness of Family, Friends and Strangers.

The kindness of people helping.

Each month is a struggle to pay for my meds.
Each month is terror that I will not be able to afford to continue to fight this battle.
I do Not want to die.
Not yet…

Thank You So Very Much to Lisa Davis! and “Its Your Health” radio for giving me the opportunity to get my info out there!!

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Posted in appreciation, Burzynski Clinic, Coping, Doctors, Dr. K. Keller, Emotions, excitement, Getting The Word Out, gratitude, hope, Special People, strength | 2 Comments »

Monday, December 28th, 2009

UPDATE #4: Radio Interview – Its Your Health

The interview on “Its Your Health” radio has been rescheduled to Dec 29, 8:30-8:50am CST.

That’s tomorrow.
Woo Hoo!!
Thank You Lisa!

TeamDenise!

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Posted in Emotions, excitement, Getting The Word Out, gratitude, hope, Special People | 1 Comment »

Sunday, December 27th, 2009

Bath Water

Time to shake this depression off of me like a dog shakes off its bath water.

Ok, I had a good cry
a Very Good Cry
felt sorry for myself
got mad
got mad at this cancer
got mad at Mr. Sack
got mad at my Folks
got mad at myself.

I can do that
I am allowed to do that.

Now, it’s
Time to
Stop the whining
Stop the public wailing.

I need to look back
and be
Grateful for the
Blessings I received.

I am Thankful for the Holiday cards people sent me. I loved opening each one. Anticipating the greetings, the decor of the cards, if anything would be enclosed – a note, a personal newsletter, photos, a memento.
Thank you.

My Mom & Dad paid to have the leak in the roof of the Hyundai fixed. That is a Huge stress off of me, but am sad at the “waste” of this large amount of money.
Thank You.

My Dear Friend, Crystal, gave me a loaf of the BEST Banana Bread I think I have Ever had! I Tried to ration it out, but it was too good. It is gone.
Thank You.

My Dear Friend, Christy, gave me some Spiced Pecans and Oreo Candy Cane Bark. Since I am not supposed to eat sugar, I am being very careful in rationing this out – but what I have had so far is Very Yummy!
Thank You.

My Dear Friend, Donna, made me a Beautiful name tag to wear at my social events. It is beaded and has fringe and is just LOVELY!
Thank You.

My Dear Friend, Grace, took me to dinner where we laughed and cried and laughed and drank too many margaritas.
Thank You.

My Friend, Josie, gave me a Lovely plaque inscribed with a quote attributed to Eleanor Roosevelt; “A woman is like a tea bag. You never know how strong she is until she gets into hot water”. This is very inspirational.
Thank You.

My Dear (Old-time) Friend, Marianne, sent me an AWESOME handmade Christmas stocking. Made of Funky Wild Pink Paisley patterned fabric with “Girl Friend” beads and decor and white faux fur and pom-pom trim, and filled with fun and useful items. It was So Much Fun to unwrap!
Thank You.

In lieu of gifts, I received some Unbelievable donations for the Holidays. I was several people’s “Charity of Choice”. While I do not relish this title, I am Extremely Grateful to be gifted in such a manner.
* Cherie’ & Billy
* Marianne & Jim
* Patti
* Katherine & Family
* Margot
* Cindy & Family
* Christy & Bill
* Niver Family
Thank You is not, and will never be, enough.

My (Old-time) Friend, Cherie’ & Hubby, Billy, made me their “Charity of Choice” in their annual Charity Exchange with their Friends. I received (an additional) 5 generous donations due to their gracious act of kindness.
Again, Thank You is not enough.

So… while I will always mourn the loss of the life that was planned with Mr. Sack and what I gave up “for him”, for everything we had talked of, for everything we had planned, for everything we had promised… for the 35+ years that I believed him to be the epitome of a man and held him up to compare all others to (which they were never able to measure up), for the lies he told and the shallow judgment he made, for him “dumping” me one month after my diagnosis – for now, there is enough whining about what was lost and be Grateful for what I have.

Shake off the Bath Water.
The dampness will dry out in time…

I am Truly Grateful.
Thank You.
Thank you for thinking of me.

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Posted in appreciation, Coping, depression, determination, Emotions, Friends, Friendship, Generosity, loneliness, tired | 3 Comments »

Saturday, December 26th, 2009

Flipping the Switch


The “Season” is over.

The commercials on TV are
No longer
about Christmas
No longer
about the celebration
No longer
about the joy.

No more Merry Merry
Loving Family
Happy Couple
Smiling Children

It’s almost as though
a switch
was flipped
a marketing switch
was flipped.

Which is fine
with me.

Right now
This moment
In time
it is
too much for me
the pain is
too much for me

So flipp the switch
and I will cope
much easier
It will be
much easier.

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Posted in Coping, depression, Emotions, frustration, loneliness, overwhelming, sadness, tired, venting | No Comments »

Friday, December 25th, 2009

Merry Christmas 2009

Ho Ho Whatever.

Here I am at home alone.
I’m going back to lay on the couch.
Maybe cry a bit more.

Tis the season to be jolly…

Tags:

Posted in Coping, depression, Emotions, heartbroken, loneliness, overwhelming, regret, rejection, sadness, tired | No Comments »

Thursday, December 24th, 2009

Christmas Eve 2009

Another emotional roller coaster of a day.

The cold is settling in…
I feel it
in my body
in my heart
in my soul

I feel it
I will be glad when this season is over
When the festivities and celebrations have passed
When the joy is a blurred memory
When the memories of my hopes and dreams are
no more than dust
no longer shards
piercing my heart

I feel it
the cold front moving in
The wind is whipping up
The trees are blowing from side to side
I can imagine that it might even howl later

A fitting sound for my mood

I covered the plants in the front, but have not the energy to finish the ones in the back. I lost some in the last freeze, I can only guess I will loose more in this one. I no longer have the energy to do everything.

Depression sucks almost as much as cancer.

Merry Christmas Eve.

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Posted in Coping, depression, Emotions, frustration, heartbroken, loneliness, overwhelming, rejection, sadness, scared, Stress, tired | 1 Comment »

Wednesday, December 23rd, 2009

UPDATE #3: Radio Interview – Its Your Health

INTERVIEW UPDATE #3: Latest update to last update from Lisa Davis of “Its Your Health Radio“:

“No shows tomorrow (Dec 24) due to technical difficulties. Sorry again Denise. Everyone have a great holiday!”

Soooo… my radio interview is postponed again ~sigh~
HOPING that my time will come.
Will be Grateful when it does!

TeamDenise…

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Posted in Aminocare A10, Antineoplaston Therapy, Burzynski Clinic, Burzynski Clinic Doctors, Dr. S. Burzynski, frustration, Gene Therapy Drugs, Getting The Word Out, Other Things, Stress, tired | 1 Comment »

Wednesday, December 23rd, 2009

Test Results – Tumor Markers #8

My PCP‘s office faxed my lab results…

Last Friday (Dec 18 2009), I had the bloodwork drawn to track my tumor markers. It was draw #8. I’ve been having pretty good results to-date, some ups some downs, some increases that I am concerned about…

This blood draw was for the monthly tests (most specifically my CEA Tumor Markers).

* April 15, my baseline CEA tumor markers were 63.1 ng/mL (nanograms per milliliter). This is High, as Norm is 0.0-3.0 ng/mL.
I honestly don’t know how high “really high” is, but – in my internet searching – I read one gal talk about the mid-200′s, so I guess my high is not That high, but It’s High To me.
* June 03, my 2nd draw CEA tumor markers were 35.9 ng/mL
* July 03, my 3rd draw CEA tumor markers were 12.8 ng/mL
* August 27, my 4th draw CEA tumor markers were 3.9 ng/mL
* September 18, my 5th draw CEA tumor markers were 3.3 ng/mL
* October 16, my 6th CEA tumor markers were 3.2 ng/mL
* November 20, my 7th CEA tumor markers were 2.7 ng/mL
* December 18, my 8th CEA tumor markers are 2.8 ng/mL
This is a .1 INCREASE from last month, but still has me within the Normal range.

As always, I’m unsure, but this (CEA: The Test) continues to answer Some of my questions…

Still hoping that this all means Something Good… I can’t help but be cautious cuz the other shoe always falls for me. Always.

My Other Numbers as of December 18 2009 blood test results:

* CA-125: 14 U/mL (Reference @ 0-35)
a 3 point INCREASE – up from 11 U/mL from November’s draw… I’m not happy, but am still well within the normal range, in fact is very low normal range. But another increase Does worry me.

* CA 15-3: 20 U/mL (Reference @ <32)
a 1 point DECREASE – down from from 21 U/mL from November’s draw; I’m still within the normal range.

* CA 27.29 (see CA15-3 above): 31 U/mL (Reference @ <38)
a 4 point INCREASE – up from 27 U/mL from November’s draw. These increases scare me, though I am still within (high) normal range.

The CA 27.29 test is used to monitor your:

  • Response to treatment
  • Status of your cancer
  • Possibility of early recurrence

Try and relax
Don’t stress the body
Don’t stress the mind
Don’t think about not having a job, Mr. Sack, the total and complete devastation of all my hopes and dreams.
Just don’t think about it all.
Yah, right.

I am so scared. Never stop being scared. Never stop reaching out… to find… no one

Visualizing my Dragons
my Warrior Dragons
Please don’t stop burning.

Please.Don’t.Stop.

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Posted in Burzynski Clinic, Coping, Dr. A. Khan, Dr. L. Deleon, Results, scared, Stress, Tests, tired | 1 Comment »

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