To Read Tami's Story from the Beginning

Just CLICK HERE. Her blog begins on March 12, 2009 with a post titled "Tami's Myelodysplasia Diagnosis." Then at the bottom of each post, click on the words "Newer Post" located just below the comments section on each page.

Sunday, August 9, 2009

Lance Armstrong's LIVESTRONG San Jose Army

Yesterday I stepped out of my ordinary by attending a Lance Armstrong Foundation (LAF) event. It was a LIVESTRONG open house in Cupertino, CA. The event consisted of networking and 3 guest speakers.

Clockwise from top left:
Leigh is an LAF Grass Roots Advocacy Trainer and was our emcee for the afternoon. Richard Tate is from HopeLabs a grantee whose company received funds from the LAF to help fight cancer. Giovanna Baldassarre is one of the local LAF grass roots leaders. And Jere is a 3 time cancer patient who is facing her stage 4 colon cancer with the kind of openness and humor that makes her an excellent educator and public speaker.

Dozens of us turned out interested to learn how we can help to raise public awareness about and/or become involved with the Lance Armstrong Foundation and all of the good work they do within our local communities.

In blue was Ronni Shehorn-Maestas who created the website Stepping Stones at I knew of Ronni through my colleague Mimi who is friends with Ronni's sister. Mimi and Ronni's sister have helped to keep me optimistic during Tami's ordeal with cancer as Ronni also received a marrow transplant at the same hospital Tami is being treated at. I didn't get to say hello in person but am sure that Ronni and I will meet again someday.

These shoes weren't made for walking.... They were made for kicking cancer in the ass!

And those shoes belonged to Jere Carpentier the standout guest speaker yesterday. Not only was she informative and entertaining, Jere is a 3 time cancer patient who has also suffered severe damage to her heart from a cancer treatment. After suffering from and surviving Hodgkins Disease and Lymphoma, Jere is now suffering from her third primary cancer, meaning this is a new cancer not an old one that spread, and has stage 4 colon cancer.

But she's not giving up. She is out there educating the general public and recently was asked to speak in Sacramento to help pass a bill to improve chemotherapy treatment options for patients in need just by sharing her own story. She's one of those truly special people, a doer, who even as she is so sick is accomplishing more then most healthy people on a day to day basis.

Richard Tate, Director of Communications and Marketing at HopeLab also spoke. His company has created a cancer themed video game called "Re-mission" for adolescents and teens suffering from cancer. You're probably wondering how a video game can help fight cancer right?

For most of us missing a pill will never have catastrophic consequences but for a cancer patient missing pill can become a matter of life or death. Giving cancer the tiniest foothold to reestablish it's presence must be avoided at all costs. Well studies have shown that the kids who play Re-mission are more likely to become pro-active patients taking their meds on time to help control their cancer and maintain the upper hand over their disease.

Their website says: Re-Mission is distributed by HopeLab to young people with cancer, their families and caregivers free of charge. As of April 2009, more than 142,000 copies of Re-Mission had been distributed to 81 countries worldwide.

To download or order a copy of Re-Mission™, visit

And I made some great new friends. That's Peter on the left. He and his wife Patt Baenen-Tapscott, a cancer survivor, were kind enough to strike up a conversation with me to find out who I am and why I was there at the open house. Turns out they are very involved with the Lance Armstrong Foundation by running a series of practice time trials for those who compete in bike races or just enjoy hobby bike riding. The registration fee (usually $25) is donated to the Foundation. Their website and the time trials are called Beat the Clock & Help Beat Cancer. There's one more ride scheduled this year for August 29th so check it out if you're a cyclist :)

And thanks to Patt for all of the photos in this blog post. She was snapping away throughout the meeting and generously gave me permission to use her pictures for this post.

Hanging out with the LIVESTRONG team at the end of the meeting to learn more about how I and, the new website I'm creating, can help others.

And on a side note: My new nerd glasses are awesome! The room the open house was held in would have normally triggered a migraine for me because of the glaring window light combined with the fluorescent lights overhead.

The glasses are tinted pink (3X) and have a non-glare coating (front and back) to prevent migraine and light induced headaches. Such a simple fix for a debilitating problem.

I've suffered from headaches and migraines for years and was digging around on Google to better understand how light triggers them when I discovered my condition is called "Photophobia" and this treatment balances out too much blue light by adding pink with glasses or contacts. The thing that bothers me most is that my own doctor never told me about them! I had to find out for myself by researching online. The optometrist I went to said this treatment was discovered about a decade ago. I've had them 4 days now and have not had a single headache. Apparently for most people they can prevent the headaches as well as make them go away instantly if you suffer from Photophobia.

The only downside is that because my vision is 20/20 my insurance wouldn't cover the cost of the glasses because they didn't have a prescription in them and apparently that is the only factor used to determine medical need. Am going to have to start complaining about that as clearly my need was medical! But no matter what they cost they are worth every penny. I didn't realize how often I was feeling bad until I felt better :)

1 comment:

  1. Wow, that is great to know about the special glasses helping your migraines! I sometimes get them, too -- worth trying. It's amazing what doctors (and insurers!) tend to overlook or discount. I'm glad you've found relief!