The Side-Out Foundation

It’s not difficult enough to have breast cancer but then to have to deal with the medical insurance company giving you a hard time about the drug that’s prescribed by your Doctor in order to prolong your life. It is cruel! Yet this is the medical system we are currently forced to deal with.

According to my Doctor, the insurance companies are way behind the curve when it comes to new drugs offered to patients. The Doctors we depend on are forced to make a winning case to the insurance companies to convince them to accept and pay for the drugs that their patients need to live. At the very least it is so frustrating for the patients to know a drug is working but then to be denied getting it because of cost. The Doctors are equally or more frustrated because they cannot offer their patients drugs that the insurance won’t cover and ultimately are not able to give the best possible treatment for the people whose lives are in their hands. HORRIFIC!

At present this is what is going on in my roller coaster Cancer ride. Two drugs have been targeted for my treatment called for in the report of the Molecular Profiling of my tumor. We have talked about the new technology of being able to recommend the drugs that will work on ones particular tumor profile The profiling indicated Abraxane in conjunction with Avastin would potentially work against the growth of my tumor’s particular genetic makeup. These 2 drugs were given to me and appear to be working from tumor marker results. Blue Cross/Shield has so far only paid for 3 treatments of Avastin and still have not paid for about 3 or 4 other treatments I have had. Consequently I was refused the treatment that appeared to be working to combat my cancer. The FDA just a few months ago approved Avastin for Breast Cancer but coming from the prospective of our medical insurance company Avastin is a very expensive drug so they need more proof that it is necessary in my care. IT’S ALWAYS ABOUT MONEY!

The case is still pending so keep tuned in. I had my PET scan today so perhaps we will have the proof we need that the drugs have been working.

Wow, I just got schooled. I just came from the President’s Series Program on Breast Cancer that INOVA put on featuring 2 folks from our advisory team, Dr. Edmiston and Dr. Robert. Ductal carcinoma in situ, estrogen receptors, aromatase inhibitors, yikes! How can I be invested in this cause when I have hardly a clue of what any of this means. I am glad I attended because it was eye opening. Dr. Edmiston’s presentation was tremendously scientific, so much in fact that I could barely understand. But I have never been good at the scientific thought…I need a lot of time to figure things out. Dr. Robert on the other had a less scientific approach and I was able to grasp more of what he was saying. He had a great analogy about target therapies. He said in the old days chemotherapy was like walking into a room with a shotgun and shooting out all the lights versus just flipping the light switch. Targeted therapies help them find the light switches that turn the cancer off.

One thing that was very interesting about this gathering, is that most of the folks attending the event were 60 or older. I very well could have been the youngest person attending. Younger people need to get involved in this fight and learn more about the disease. It could save their lives.

Well, I have some research to do. Hopefully I can find some great content to put on our site to help make people aware of what is happening out there.

Me (Rick Dunetz), Dr. Kirsten Edmiston, Medical Director, Inova Fairfax Hospital Cancer Center; Dr. Reuven Pasternak, CEO Inova Fairfax Hospital Campus and EVP, Academic Affairs, Inova Health System; Dr. Nicholas Robert, Chair, Research Committee and Cancer Committee, Inova Fairfax Hospital Cancer Center.

I have written quite a bit on the subject of Molecular Profiling only to find out that the glossary of terms around this subject are many and varied. Having now spent several hours researching this subject at the National Cancer Institute perhaps their label of Molecular Diagnostics is most common. To that end take a look at the following slide which clarifies the process associated with this revolutionary technique that represents a very advanced set of tools to diagnose and treat disease.

molediagppt

Another piece of exciting news on this subject hit the front page of AARPBulletintoday and is a must read. This could be the beginning of a “Ground Swell” of support directed at insurance companies and those suffering from breast cancer who need to take notice. http://bulletin.aarp.org/yourhealth/diseases/articles/good_news_about_cancer1.html

Fact - The National Cancer Institue 2007 Report on Trends in Cancer made no mention of Molecular Profiling, in spite of its most recent significant contributions to the field of diagnosis and treatment therapies.
I would welcome an explanation from NCI or any practicing professional in cancer research.

Feeling pretty fatigued from chemo and come to find out that my medi-port is acting up. (Routinely tested before chemo.) So it’s off to the hospital for what they call a dye-test. They inject a dye into the port in order to make sure the chemo is going to the right place without any obstructions. Hospital instructions indicate not to eat and to have a ride home - I said SAY WHAT? I’m only coming in for a die study not surgery, what do I need to fast for?

Under any circumstances I was not mentally prepared to have the port replaced which requires surgery. At least not at this time. For all you people that read this blog. Please question everything you do not understand. We have to be our own advocates. We may have a disease but we still have the power to make our own decisions as to what is being done for us or to us.

The good news is, after going through all that, there was nothing at all wrong with the medi-port and I’m relieved!

Belief: a state or habit of mind in which trust or confidence is placed in some person or thing.

Belief in positive outcomes is the first step to a strong mental foundation. Without it survival is not really in the picture. When my mother was diagnosed with Breast Cancer a second time, her outlook on life was less then hopeful. The only belief that she could grasp onto was of the negative nature. After weeks of “tough love” communication and a kick in the butt, we got her to get out of the house to attended the miracle volleyball match that changed her outlook.

Here is how you can get positive beliefs moving forward:

• You need to believe in a positive outcome yourself before you can make others believe.
• You need some sort of catalyst to set a positive belief in motion. That “catalyst” can come in the form of a miracle volleyball match, a nice letter or card, an intervention, a phone conversation, or even a swift kick in the butt.
• Once the belief is set in motion, it must be maintained. Don’t expect your loved one to be rainbows and sunshine every day of their lives. You need to remind them over and over and over again.

This is my Mom. The picture was drawn by my brother Ray for my Mom’s 70th birthday and it’s a pretty awesome accomplishment. It is a picture that was taken when she did community theater in a little show called Can Can. My brother actually made this picture with a bunch of ink dots and slashes…it’s really remarkable when you see it up close. This web image simply does not do it justice.

My Mother’s 70th birthday could very well be the greatest day in her life and in many ways, one of the greatest days for my family. She was surrounded by people who love her and her youngest, that would be me, sang selections from West Side Story and switched up the lyrics (”Glo-ree-a I have a great Mom named Glo-ree-a”). She always wanted me to do theater…ugh…definitely not my bag. But the most important part of that day, was that her family and friends had never seen her so happy.

Mother’s day will never compare to her 70th. In fact, my Mom kind of scoffs at these minor holidays. For my Mother, every day that she gets out of bed is a holiday, every day is a gift. This is the best advise anyone can give.

So to all the Mother’s out there fighting this disease…

Make every day a holiday, stay positive, and live well.

Happy Mother’s Day from the Side-Out Foundation

About 3 years ago, my former company hired a new CEO. A man by the name of Brad Wise. In our first official company meeting, Brad put together this presentation about where the company is now and where we see it going in the future. The very last slide of this presentation had a picture of Yoda, the Jedi Master from Star Wars, and next to the picture was this quote, “Do or do not… there is no try.” I love this quote, and just this season I integrated it into my high school team’s dynamic. So often my players will say things like “I Can’t” or “I’m Trying”, but in all reality they just do not want to do the task. I am already seeing a change in my players…they are working hard not to say those things and improving every day.

Continue reading »