Just back from Texas and wanted to check-in with my IV friends.
Scott (sriccio), founder of Accelerate Progress (see link at top of page) and I visited a dear friend of ours, CTL, yours and DNDN.
No one should have to go thru what I witnessed this past weekend, especially not a veteran, who gave his life, albeit not knowing it at the time. I will explain that statement later.
We are not sure if our friend received Provenge in a 2005 clinical trial because we can't find out if the trials have been unblinded. It would appear that it is going to take an act of congress to find that little tidbit of information. Not that it matters much at this point. Our friend knows it is probably too late to help him. Being so close doesn't count when the winners get to live and the losers get a horrific death sentence.
I saw a 60 year old, once stoic, vibrant military man reduced to a shell of a man.....almost baby-like. As if the way our friend is dying isn't bad enough, to add insult to injury, a long agonizing death can cause financial hardship.
Unfortunately, because our friend's service to his country involved "secret" missions, the VA says they have no record of him serving in an area that would expose him to agent orange, a chemical that has been linked to prostate cancer in Vietnam Vets. Therefore he does not qualify for this benefit category. But wait...here is the kicker. He does not have a family history of any type of cancer. No one in his family has ever been diagnosed with cancer.
His wife tried to get an $1850 loan for a burial plot. She was denied the loan because she had no collateral.
All is not lost, however. CTL stepped up in good ole salt of the earth, good people, CTL style. CTL had already planned to send our friend a donation; but, after I emailed CTL's BOD, Arnie immediately emailed me back wanting to know our friend's home address. Within a couple of minutes, I received another email from Arnie which stated, "tell his wife a check for $2000 will be in the mail Monday." Now that's what I call advocacy. A BIG THANK YOU to those who donate to CTL.
Just so you know, Scott of Accelerate Progress has been working his advocacy butt off, too. He has had several "positive" conversations with Dr. Sharfstein, FDA Deputy Commish and a few other influential people.
If you are feeling generous, you can't go wrong with Abigail Alliance, Accelerate Progress or CareToLive.
As I was walking to my gate in Dallas' airport, for a brief moment, I was alone in a walkway tunnel. I experienced this overwhelming feeling of sadness. I realized that would be the last time I see my friend alive. I have known this for a while but sometimes the heart doesn't want to accept what the brain is saying.
I take comfort in knowing that my friend will not suffer any more. I also take comfort in knowing he will be amongst some of the greatest this world had to offer....my first husband, Leroy, my grand-daddy, David, my sister-in-law, Tomasa, my childhood friend, Vera and so many others.
At this rate of finding a cure for cancer, it is not a matter of if we or someone we love gets a diagnosis of cancer, it is a matter of when.
Hug your children, often. Take time to show love to those you love. I have yet to meet someone on his/her death bed who wished he/she had spent more time at work.