Monday, May 17, 2004

NAME DROPPER

Overheard at lunch today at Lee's Deli in the City: "Yeah, I used to do some work for the Stones (as in Rolling-my note). Yea, Mick's a real nice guy."

No remark or response from the guy he was talking to. He looked as impressed as I was. That is, not. I wanted to ask him if he could call Mick and get me some tickets to their next concert. Name dropper. At least I don't go around saying I once worked for Madonna's Record Company and that she smiled at me passing in the hallway. Sheesh.

Now, if he had said he used to do some work for Earth Wind and Fire and that Maurice and Philip were nice guys, then he would become my new best friend.

Late.

Sunday, May 16, 2004

LAST TRAINING RIDE

Today's our last training ride before we go up to Tahoe for the Century ride. Last week we rode 1 mile in silence in honor of Bill Telesmanic, one of the team honorees who recently lost his battle with cancer. People shared their feelings and appreciation for Bill and each other. Riding 100 miles in one day is hard, but Bill is a reminder of why we do this.

Sunday, May 09, 2004

THE DAY THAT CHANGED EVERYTHING: My Cancer Story

(my Bio for Team In Training, the world's largest endurance sports training program.)

January 8, 2003 started out as just another ordinary day when I got a phone call from my doctor after that morning’s routine physical exam. Everything in my life was about to change.

“There’s a problem with your blood. You have Leukemia.”

Nothing can prepare you to hear those words. It feels as if someone just punched you in the gut. You feel like your going to be sick, when in fact you already are. Numbness sets in. “I have cancer?” My first thoughts are for my wife Jean and our 2 year old daughter, Gillian Hope. Am I going to die? I’m too young, I feel fine, strong, so much to do. I can’t leave my girls now. I can’t have cancer…

The next few days are a blur. We see an oncologist first thing the next morning and I’m whisked in right away for a bone marrow biopsy which collects a sample of bone and tissue from your hip bone for examination. Not a particularly pleasant procedure (you’re sticking that thing where?!) The results confirm the initial diagnosis, Chronic Myelogenous Leukemia (CML). I refused to live in denial and faced the facts head on. I went on a learning binge, reading books and researching online to learn everything I could about this killer roaming unimpeded inside of my body, and most of all, how to kill it.

The tests show that I’m in the first stage of CML and initially put on the drug Hydroxyurea to control my spiking white blood cell count. Regular blood tests ensue as my progress is monitored. I experience extreme nausea and think there’s no way I can handle this everyday. The bone marrow procedure seemed to have irritated a nerve bundle in my back, causing debilitating pain as well, excruciating, crying-while-you’re-calling-911 type of pain. After two subsequent trips to the E.R. I found myself bedridden for the rest of the month while my back healed, adding Morphine and Vicadin to my prescriptive diet. Not a good month. What a start to the new year. Happy New Year indeed.

Things turned the corner as my treatment changed to an amazing new drug called Gleevec. Available to the public for less than two years it was approved by the Federal Drug Administration (FDA) in a record 6 weeks. This drug specifically targets the malignant cells found in CML and leaves the healthy cells intact. It turns off the switch that allows these killer cells to keep growing. Amazing. Side effects, minimal. Mild nausea and fatigue, nothing debilitating. The following weeks saw my blood count free fall, then normalize and stabilize. It seemed to be working, extremely well in fact.

My second bone marrow biopsy confirmed that fact. On July 8, six months after I was diagnosed, the biopsy results came back as a complete negative cytogenetic response, in other words, the most sophisticated medical instruments available were unable to find any malignant cancerous cells in my blood. Zero. My chances prior to Gleevec, less than flipping a coin.

I feel like I’ve been born again. I’m different, stronger, more humble, focused. My new motto-“No such thing as a bad day.” I’ll still remain on Gleevec. It isn’t considered a cure yet, but delaying the progression of the disease. That’s why Team In Training (TNT) and the Leukemia & Lymphoma Society (LLS) is so important, to continue funding research to find a complete cure for these cancers and to find a “Gleevec-type” drug for the other types of blood cancers as well. I’ve since found out that the initial research of Gleevec was funded by the LLS. So what you do as TNT participants literally has helped save my life. You really do make a difference.

The journey continues. I’ve since completed two century rides with TNT, the first one less than a year after I was diagnosed. It’s my way of giving back to the cancer community, of which I am now among the ranks. It’s also a way to mark my new birthday of sorts, getting a second chance at life. Thanks to countless and nameless doctors, researchers and technicians, they have found a treatment that potentially allows my daughter to grow up with her dad. Priceless. What you as TNT participants, coaches and mentors do is priceless to me as well. My family and I thank you for your effort and commitment on my behalf and others who have felt the chill of the doctor’s words “You have cancer.”

Stay well,

Roman Seguerre
Benicia, CA
38 years old, Chronic Myelogenous Leukemia, 1/03

Saturday, May 08, 2004

WHY BLOG?

It's all about STAYING CONNECTED: staying vitally in touch with friends, family and soon to be friends

It's all about SELF-EXPRESSION: sharing and sharpening my gift, finding my voice

It's all about KNOWING AND BEING KNOWN: a life worth living is worth recording

It's all about SHARING LIFE with the ones you love: remembering the moments - the mundane and the ordinary, the poignant and transcendent