Cycle for Survival, 2015

     My last blog was entitled, "My Annual Donation Request."  To date, that blog posting has received the fewest number of hits since I began blogging in December of 2012.  It's no surprise.  The title gave me away, letting readers know that I was asking for money.  I understand.  I'm not sure I would read some sob story which knowingly would end with a link for me to make a donation.  Regardless, I shamelessly let everyone know that my family and I were, again, participating in the Cycle for Survival fund raiser this past Saturday.

 
     Look at this room jammed with 100 spin cycles!  Each cycle had a rider on it for four hours straight.  The music was loud and the instructors, (on the elevated cycles to the left,) were energizing.

     Scanning the room as I rode, I was brought to tears.  Most riders were there because a loved one died of cancer or is currently battling the disease.  Others, like me, were there because they, themselves, are cancer survivors. There were hundreds of participants riding for research dollars. 

     Being the third year we've participated in this event, there was some sign-up and donation solicitation "fatigue."  It's hard to keep going back to friends and family to ask for more money...again.  But in the end, we pulled our stuff together, showed up, and Team SHEADE raised over $4,800. I raised nearly  $2,900.  Despite the anemic pre-event phase, we ended strong!

     This year, my dear friend, Brigid, rode with Team SHEADE.  Brigid has been with me every step along my cancer journey.  When the flu knocked out three riders for this year's event, Brigid got up early on a Saturday morning and drove to Chicago to help us. 

(Hey Stef...I have our necklace on.)

     





     In 2013, when I was too sick to ride, Wynn, Nathan and Nina rode for me.  This year, Wynn and I rode together.

     Leslie and Caitlin - riding for the 3rd year!   (Leslie married our nephew, Larry, last year and Caitlin is engaged to Larry's twin, Harold.)

     Two years ago, my brother-in-law, Bob, got us involved with Cycle for Survival.  Here he is with Wynn's sister, Eudice. Both are 3-time C4S veterans.

    

     Andy is our niece, Jayme's,  husband.  He, too, has ridden in three events.  Although an avid supporter this year, Jayme didn't ride because her baby is due any time now.

    


     Bob with Larry.  Larry, too, has ridden all three times.

     

      Friends, Cookie and Brent, with Bob and Eudice.

 

Signed up to ride but missing from this picture are Becca, Devin and my friend, Kisha.  Becca and Kisha were home nursing bad cold/flu symptoms and Devin was home taking care of little kids.  We know they, along with Nathan, Nina, Bruce, Tracey, Livy, Jake, Harold, and Jori - all previous Team SHEADE riders - were with us in spirit.

     To those who are currently battling cancer:  It was overwhelming to see such large numbers of people sweating like crazy to raise money for cancer research...for us.  I take it very personally.  I speak for all cancer survivors when I say, "Thank you to all participants and donors for helping to give us a fighting chance to live a little longer and a little healthier, despite our disease."

P.S.:  I ran into Becca  - who feels so badly she wasn't able to ride this year.  Here's her quote, "I'm riding next year, for sure.  I don't care if I'm the only one on that bike, I'm riding."  Hey Becca, I'll ride, too!

My Annual Donation Request

On Saturday, February 21st, my family and I will again be participating in Cycle for Survival, a fund raising event for research at Memorial Sloan Kettering Cancer Center. This fund raiser was started by a woman, Jennifer Linn, and her husband, David.  Jennifer was diagnosed with a rare type of sarcoma in 2004 and died in 2011.  She was an avid spin cycler and together with David they created an incredible fund raiser to support research for rare cancers at MSKCC.  

My family and I came to learn about this fund raiser because David is a relative of my sister-in-law, Debbie, and my brother-in-law, Bob, is a close friend of David's uncle.  (It's a family thing...)  In any case, Bob rallied our family to participate in this fund raiser shortly after I was found to have metastatic lung cancer.  

This event raises money for research into rare cancers.  Lung cancer is the most common cancer.  However, cancer researchers and scientists now share information, working collaboratively to find new treatments.  MSKCC, famously known for their cancer research and care, has contributed to data and information that has benefited all of us with all types of cancer.  This, along with with the family connection I mentioned above, is why I ride to raise funds for MSKCC.

Of course I worry that the people close to me are experiencing "donation request fatigue" because I've been asking for your support for the last two years. In the past, my family and friends have been incredibly generous. So generous that it's hard for me to come back each year to ask for more.  Please understand that I am only able to ask again because I still need more research for treatment options...and I'm still hoping for a cure. I also ask because, as a never-smoker, I know that lung cancer can happen to anyone. It happened to me and it can happen to you. If possible, please consider making a donation. It's a great cause for those of us who are counting on more research to keep us alive a little longer. 

Just click on the link below:
http://mskcc.convio.net/goto/LunaRidesforResearch

If you can't donate, please know that I understand.  It's not possible to contribute to every donation request that is received.  But...I will make you a deal.  If you donate to my cause, I'll donate to yours.  Just ask me :)

And...thank you.

Proposed FDA Regulations of 'Lab Developed Tests': A Potential Problem

I need your help.

There are newly proposed FDA regulations requiring approval for "lab developed tests", (LDTs).   Although these regulations will apply to all LDTs,  I'm particularly concerned because these regulations could have significant consequences for cancer patients.  Approval of LDTs can take years. I fear that those of us with advanced cancer will die waiting for the approval of tests that have already been validated; proven to be accurate, sensitive and specific. These regulations will put the brakes on breakthrough testing which leads to new treatments and potential cures.  I am alive only because of new science and the testing and treatments that have followed.  These regulations would be a huge step BACKWARDS. 

I know, one day, my medication will stop working and I will need testing 
to guide my doctors in a new treatment direction.  I will need this testing  quickly and, potentially, would not be able to get it if the test is new and not yet approved by this FDA regulatory body. 

Please read the information provided in the link below.  Please sign the petition.  

 https://www.change.org/p/us-fda-withdraw-proposed-ldt-regulations-these-could-limit-pt-access-to-validated-therapy-path2cure?recruiter=282810&utm_source=share_petition&utm_medium=twitter&utm_campaign=share_twitter_responsive

If you have it in you, let your Congressional Representative and your Senators know that these proposed regulatory measures should not be passed. (You can email them.)

Find your Sentors: http://www.senate.gov/general/contact_information/senators_cfm.cfm 

Find your Representative:  http://www.house.gov/representatives/find/

You can even email President Obama/the White House:   http://www.whitehouse.gov/contact/submit-questions-and-comments

Any help is greatly appreciated by me, everyone with cancer, and those that love us.