PiTy Party

Strange day and night. Drizzle, cold for Texas, overall depressing.

Have a huge number of very important VIP's arriving in next few days. 

From Saudi, Japan, Iowa, California, Florida, DC, damn farm feels like Disney land.

Had several excellent meetings this week with my developing management team. 

Good news is they are probably, no that is 'BS", they are smarter than me, but they still do not play chess as well as I do. 

So far, I am the better chess player. I need to cling to that, my dad used to say. " it is a poor dog that does does wag his own tail once in awhile."

Sara and Jeremy, the two folks that entered Lori and my lives over a year ago still are proving invaluable.. 

Plus they are restoring my faith in human kind. They do not know it but I am beginning to realize because of them that there are decent, honest, and caring people out there. 

Lori always said I shut myself off too much. Jeremy and Sara are helping me change that. 

I am sad tonight. Maybe it is the weather but I think it is just missing Lori. About an hour ago two dolphins surfaced off the deck of the house looking three feet away in the canal. 

God knows if we humans need proof that we are not the smartest and most compassionate examples of the animal life on this planet then just spend 3 minutes observing dolphins. 

They actually see through your soul.

I am enjoying Texas but torn in that I miss being in the home Lori built for us in Maryland. Don't miss the traffic and the taxes but I miss the smell and feel of Lori.

I will get back there in a few days. 

Not to bore you but the house that Lori made into a home for me and Stephen and the animals was different. It was not a MacMansion. It was a "home" in the truest sense of the word.


This is our kitchen, (which for the record Lori never cooked in.)

This was our living room, which like everything in our house was covered in dog art.

This was a Wardle, we have several originals, all of which Lori helped me find. If you love dogs and dog oils Andrew Wardle will be a familiar name, if not just enjoy his talent.

But Lori had a humorous side. I love foxes, hell I love all animals.

She saw this lead glass hand painted mosaic of  the Aesop fable of the fox in the grape yard and got it for me. I absolutely love it an and every time I see it I think of her. 

And I smile and that is a good thing.

Some men collect cars, some trophies (animals heads, ugh) some men collect beautiful women, some money, some homes, or airplanes.

I always loved collecting and meeting characters. 

(For the record, I think Lori was the most beautiful woman I ever met, inside and out). 

I have been lucky, I have met the Richard Gere's, Cindy Crawford's, Candice Bergman, Susan Butcher, Walter Cronkite, Charlie Wilson, Tom Cruise, Olivia Newton-John, and a core of others, but my wife was my favorite and most unique character.

Our relationship was not perfect. I suspect few are. I told Aquilino the other night that overall 25% of our marriage was bliss, about 60% was good and about 15% was hell. 

He said I should quit bitching, I was more fortunate than most.

I miss some of my characters, great deal. 

Deday Larene, a noted criminal attorney in Detroit who frankly, helped me grow up and start to see the world as it is, not as it is packaged.

I miss Stephen Boynton, an alcoholic, but brilliant lawyer who disagreed fundamentally philosophically with virtually every view I had, but who I admired for his wit and wisdom.

I miss a lot of characters that have gone before me.

But I have blessings as well, Mike O'Sullivan my Irish -Canadian  friend and protector of 36 years is back in my life. 

I love and enjoy my son, Stephen.

I adore my team, Eduardo, Groe, Tim, Nick, John Harvin, Chris, and Paul Januzzo and so on. 

Everyone one of them is a character. If it were two hundred years ago we would met yearly in New Orleans to divide the spoils of our blunder from our "pirateeing." 

You know what this blog is about tonight. I am having a stupid pity party. I am used to being alone but with Lori I was never lonely. Go figure! 

Some characters you simply cannot replace.

GBT stands on the verge of changing the world in showing that profitability, environmentalism, social equity and ethical capitalism is possible, but it is bittersweet, I wanted her to see this all come to fruition. 

Don't know what you believe about life after death.

John Aquilino says God had a plan for Lori and I just have to accept it.

In a John Wayne movie long ago, "Chisum"at the end of the movie Ben Johnson says to the Duke "Well, Mr. Chisum like they say, there is no law west of the Pecos and no God west of the Brazos." 

To which John Wayne replies, "Wrong Mr. Pepper, for where ever people go the law follows and where ever men travel, they find God has already been there."

Sorry about the self pity blog tonight. I am damn good at being alone, but I am not doing so well at being lonely. 

Musings late on a Friday night in Maryland

I have been in Maryland the past week at my home in North Potomac.

Still feels strange being here without Lori.

Also, it is the first time in 30 years that I spent time in one of my homes with no animals.

Thank goodness the possums and raccoons and deer all hang out in the yard, they remind me of what is important in life.

Been doing an enormous amount of research on certain species of fin fish that I believe will have the ability to be produced in our system.

It is amazing the amount of stupidity being written in the literature out there, especially that from so called "experts"
and noted academic powerhouses.

Who was it that said "the only thing we learn from history is that we do not learn from history" ?  Whoever he was, he was a damned smart guy. 

These open net pens, these restocking schemes, and everything in between fail to address the magnitude of the damage we have and are doing to the ocean, fail to address the pollution and by catch issues, fail to understand the enormity of the food needs for the world's population, and so forth and so on.

It is now being said so often that people no longer even listen, but "future wars will not be fought over religion and money and fuel but over food and water."

In any case I am (as usual) underwhelmed by the intelligence quotient in the literature so I have decided to use tonight's blog to remind myself of the good things in my life and I will worry about saving the world again starting Monday.

One very wonderful thing I forgot to mention is that Stephen, my son, and Victoria, got formally engaged over Christmas. Below is a picture of the three of us in Vegas over Christmas with Piglet, my first grand child. 

I also saw my horses this week. Every time I come back to Maryland I promised Lori I would take carrots to Charm and Annie. I have written a lot about Charm who I have had for 28 and 1/2 years but Lori and I rescued Annie about 15 years ago. She is a sweetheart and when she sees me drive up in Lori's G-Wagon she comes flying through the field to get a carrot from the window of the vehicle.

This is a picture taken yesterday of a muddy but happy Annie. 

Speaking of animals Lori and I rescued over the years, our last two cats Oliver (20 years old) and Wigs (19 years old) made it to Texas and are now full time with me in the house there.

This is Oliver and I think you would agree he seems to be quite comfortable in his Texas residence. (that is Bunnie in the foreground and she is not happy when someone tries to take her picture).

I could not resist taking the picture last week of gas prices in Rockport, Texas.

Do you remember when the politicians and world leaders talked of $5.00 a gallon gas and that we would run out of fossil fuel by 2027? 

I think it was Will Rogers who said, "the way you know a politician is lying is that his lips are moving."

I used to let stuff like this bother me but frankly now in the words of Rhett Butler, "I don't give a damn." 

The picture below is the face of a little bundle of life and love that has had more of an impact on my life than gas prices, business, and even taxes. She was the last rescue Lori and I adopted and she came after Lori got cancer in February 2011. 

We really did not want to keep her knowing what Lori was facing, but in hindsight thank the good Lord we did. She has brought and continues to bring more joy into my life and every life that she touches than all of the gold owned by Midas.

Her name is Rebel Jean and yes, she is named after Lori.

And finally tonight, because despite everything that I could think of to bring my mood down, by thinking of Rebel Jean, my dogs, my cats, my horses, (Lily, our parrot), Annie, Lori, Stephen and Victoria and Piglet and the future of GBT and the great team I have around me and the friends I am blessed to have, I perked up.

So, in celebration of my good mood and positive moment, I will leave you with a great statement of fact sent to me a few weeks ago by one of our key investors and team members, and good friends,  Steve Groe.

I smiled when I first read it and then decided it was more than amusing, but actually it is a great insight into life. 

Now that is a piece of knowledge that rings true. 

HELP !!!!!!!!

My grandmother always said, "God never gives you more than you can handle". 

I think that may be true. 

I guess we have go learn to handle what the world throws at us. 

Then again in the the words of Patrick Swayze in the movie Roadhouse  "it is amazing what you can get used to".

In any case this blog is a very simple one. 

I am begging for your help. 

The following appeal was written by my friend and partner of almost 20 years, John Aquilino, Jr. 

It has to do with my wife, Lori and a recent development that has devastated us and her in her fight aginat metastatic triple negative breast cancer "tnbc".

For those of you who read this blog regularly and have followed  Lori's incredible fight John's story will hopefully galvanize you to action. Lori needs your help. We need your help. 

And for the tens of of thousands of women around the world who have or may someday face this dreaded disease called "The Beast" we pray you will respond.

We need you to crash the webs sites below and to tie up their phone lines and to write so many letters they can not handle the load and they, be it UHC, the FDA, whomever, will do whatever it takes to get UHC to start to pay for Lori's treatment using Avastin again. 

                                     Lori is winning. 

        Her cancer is in retreat and now they want to pull the plug. 

                         This is Lori during Thanksgiving 2013. 

Thanks. Please act today, Do not wait. Lori cannot afford to wait. 

 TNBC HOPE & Plea for Help: by John Aquilino, Jr. 

There is real hope for women with metastatic Triple Negative Breast Cancer.

The Good News:

Dr. Joyce O’Shaunessy devised a combination of drugs for Lori Jean White, a patient she is treating at Baylor Charles A. Sammons Cancer Center in Dallas, Texas.

The trio of Avastin (bevacizumab), Halaven (eribulin mesylate), and Xeloda (capecitabine) is working.

Lori’s tumor markers have receded from 75 to 50.  Her brain mets are virtually non-existent and a 4 cm tumor on her liver is shrinking.  This is not a cure…but it is beating back Triple Negative Breast Cancer and extending Lori’s life until research in immunotherapy can defeat cancer once and for all!

Despite an initial four month “expriation date” decree, in February 2011, Lori White has survived for 37 months after being treated at Maryland’s Suburban Hospital, MD Anderson in Houston, clinical trials at Johns Hopkins, Georgetown University, the National Cancer Institute and Mary Crowley Cancer Research Center in Dallas.  

Regardless of the treatment prior to Dr. O’Shaunessy’s Avastin, Halaven, Xeloda combination, Lori’s brain mets reoccurred followed by the liver tumor. Now with this treatment they have receded!!!!

The Bad News:

United Health Care now refuses to pay for the Avastin – an out of pocket expense in excess of $15,000 a treatment claiming FDA does not approve of Avastin to treat breast cancer and that the O’Shaunessy treatment is “experimental” in spite of the fact that it is working.

Background:

 Avastin years ago proved its ability to inhibit metastatic breast cancer.  In 2011 an “outside” advisory group persuaded FDA to revoke approval of Avastin to treat breast cancer due to their conclusion that the literature showed no benefit of extending or improving quality of life while never denying it did slow the progression of metastatic breast cancer.

United Health Care used that questionable conclusion to determine that the combination of drugs “has not been proven to be effective in the combination requested.”  They are blatantly ignoring the success of the therapy for Lori White and another of Dr. O’Shaunessy’s patients.

United Healthcare’s Duplicity

In its mission statement, UHC claims “our mission is to help people live better lives.”  UHC boasts of its role of “Innovation” saying it devotes “our collective resources …to continuously testing new, targeted ways to raise the bar in health.”  Its corporate “Code of Conduct” lists five values it says drive the company: Integrity, Compassion, Relationships, Innovation, and Performance.” 

Without Avastin in the chemo “cocktail” prescribed by Dr. O’Shaunessy, Lori White will die.  By denying Lori White this three-drug combination, United Healthcare is condemning tens of thousands of other women to die.  Is that Compassion?  Is that integrity? 

That same Code of Conduct says UHC “always acts in the best interest of our customers, consumers and community…”  Is condemning one or ten thousand women to death in their “best interest” or the “best interest of the community?”  The UHC Code of Conduct brochure has a headline blazoned across it: “Never Compromise Ethics.” 

Dr. O’Shaunessy’s treatment using Avastin, Halaven, and Xeloda in combination is working were other therapies failed.  That combination has the potential of extending and saving the lives of countless TNBC afflicted women.  AND UNITED HEALTHCARE SAYS…WE DON’T CARE!

WHERE ARE THE ETHICS IN THAT!

We Need Your Help!

Last year UHC earned $7.3 billion dollars on revenues of $113.8 billion dollars. 

United Healthcare cares about their profits, not about your lives.

Make them feel your outrage.  It’s time to flood their phone lines and mail room with the demand that they pay for this important therapy.  They need to hear from you so other TNBC patients might live.

Call them.  Write them.  Send this to your local radio, television and social media outlets.

UHC from the top executive to its appeals unit needs to hear your voice.

Tell United Health Group & United HealthCare to:

·        Pay for Avastin for Lori Jean White Member ID-913018014:

·       And save countless TNBC patients’ lives

United Health Group CEO – Stephen J. Hemsley

800 328-5979

PO Box 1459

Minneapolis, MN 55440

United Healthcare CEO - Gail K. Boudreaux

866 633-2446

UnitedHealthcare Appeals Unit

PO Box 30573

Salt Lake City, UT 84130-0573

FAX 801-994-1083

Tell the FDA –

·       Approve the use of Avastin for metastatic breast cancer

·       Tell United Healthcare to pay for its use against breast cancer

FDA Commissioner – Dr. Margaret A. Hamburg via her Executive Assistant Angela Hoague

·       Angela.hoague@fda.hhs.gov

FDA Assistant Commissioner for Women’s Health – Marsha Hendersen

·       301 796-9440

·       Assistant Commissioner for Women’s Health

FDA

10903 New Hampshire Avenue

W.O.32-2333

Silver Spring, MD 20993

Breathing Room

It has been a while since I updated my blog.

I have been busy.

I was in Washington, DC the past ten days going to hospitals and meeting daily with doctor's as we tried to get an accurate view on where Lori's cancer is at this point and time.

The very good news is that the clinical trail using the experimental chemo drugs (iniparib and irinotecan) is working dramatically for Lori. Her single brain lesion has shrunk from 7 centimeters to less than 3 centimeters after the first 9 weeks.  

Also, very significantly she has no new lesions or metastasises anywhere else, not in her brain nor in her body.

And more good (though kind of scary good) news. 

The nodules in her left lung, that both her original oncologist and her oncologists at MD Anderson wanted to biopsy stating emphatically that it was cancer, are not cancer. 

After a series of tests with a leading pulmonologist at Georgetown Hospital he confirmed that they are simple scar tissue nodules from when Lori had pneumonia either this year. 

The scary part is that Lori has spent the past three months believing her cancer had spread to her lungs. I guess we all have to remember that doctors no matter how impressive are people not God, and they can and in this case did make a mistake.

So, while the battle to stop the triple negative breast cancer from reoccurring again in other parts of her body is far from over, Lori has responded remarkably to this experimental treatment.

She now has (as do those of us trying desperately to find a way to "cure" her) some breathing room. 

My good friend john Aquilino and I remain convinced that Lori is an atypical patient and a fast responder to aggressive treatments against this cancer. 

It is our belief (after months of research) that a 1-2 treatment strategy using this experimental (iniparib & irinotecan) "chemo" treatment and then working with a highly experimental new vaccine, we have discovered, a vaccine that has been shown to bolster the patient's immune system halting the recurrence of the cancer, thus stopping the metastatic behavior, will not only give Lori years to live a quality life, but indeed in this combination may be the key to an actual cure for tens of thousands of women in Lori's situation.

In any case, Lori is battling and at this moment she is beating the odds. 

Part of it is undoubtedly the chemo and her body's ability to respond.

A larger part of it is simply and wonderfully, God.

Mary, John's fiancee, and a woman of deep faith has spent months knitting Lori a beautiful red shaw, as a wrap around, as Lori is always cold from the "chemo" these days. 

When she gave it to Lori a few days ago, she whispered to Lori that each stitch was completed with a prayer for Lori's recovery. 

Lori's new shaw has literally thousands of prayers in it's fabric all asking the Lord to save her. 

How powerful is that? 

Since the news of the metastatic progression of Lori's cancer has spread, literally, tens of thousands of people have been praying for Lori across America, most of whom she has never met, but are asking God to let her beat this cancer.

Given where she was on June 4th when we were told the cancer was too aggressive and she had less than a year at most, (maybe less) and where we are today, my belief has grown and  strengthened and I truly see God's hand at play. 

Lori's battle is far from over but she will be here this Christmas and with God's help when we secure the vaccine she will be here many Christmas' to come. 

(Post script : I will get back to posting far less important, thoughts, items, and updates on this blog shortly).