HEALTH UPDATE

Sorry I haven't updated my blog in a while. After getting the news about my relapse, it's been hard for me to write, at least publicly. I've done quite a bit of journaling.

But here's the latest:

Great news. As far as my latest test results, so far so good. It came back negative, which is fabulous. The increased dosage of my targeted therapy (Gleevec) is working. But I am still waiting on the results for one other test, which is the most accurate.

I’ll try not to get too technical but there are basically three tests used to diagnose Chronic Myelogenous Leukemia (CML), with increasing levels of sensitivity. First they look at the blood level (CBC Test), then at the cellular/chromosomal level (FISH Test) and finally, at the DNA/molecular level (PCR Test), the most sensitive and accurate test. I’ve come back negative on the first two tests (which is good) and will get the results from the PCR Test in about two weeks.

The best part is that because of my negative FISH Test, it is extremely unlikely that I will need aggressive treatment at this time(!) in the form of a Bone Marrow Transplant (BMT). There is the likelihood of residual disease, but even if the PCR Test comes back positive, the trace amounts would be extemely small so I’d still continue with Gleevec and not need a BMT.

There are still some issues that need to be resolved, we still don’t know the durability of remission and this still isn’t considered a cure, only the delaying of the disease's progression. But I'm so thankful for Gleevec, without it life would be much different for me.

So basically, I can get on with my life. I’ve gotten a second chance (actually a third chance.)

Life is short. Life is good.

BACK ON THE BIKE

I was out riding on today, the first time in a while. Everyone's babying me, saying I should rest because of the fatigue and side effects of my meds but I just had to go out. In some ways they were right, it was harder than I anticipated and I had to cut short my normal loop.

At one point in the ride, fighting fatigue, I asked myself, "why am I doing this again?" The answer inevitably comes back, "because I can." Cycling has become so enjoyable to me. I love the way the world looks on a bike, the way it moves by. Distractions of life disappear, and I get to experience the sense of silence that's so important in this fast-paced life. Even the suffering aspect of cycling--my labored breath, the fatigue in my legs, the sense of my pounding heartbeat--reminds me that I'm alive and I'm so thankful for that.

Part of my route includes a portion of road that has a beautiful view of the water but also a "No Bicycling Allowed" sign, but with no explanation added. So I did my civic duty and ignored the sign, thinking it would be no big deal. A few minutes later a security guard behind a fence yelled "no biking." I smiled and just kept riding, albeit I picked up the pace a little bit, (okay, a lot). I was waiting for him to catch me with his car but to no avail. Even in my tired state he was no match for me. Just kidding, he probably thought I wasn't worth the effort. I can't wait to go by there again.

THE "L" WORD

I believe life is all about the "L" word. Here's some quotes I came across in my reading. Enjoy.

"Someday, after we have mastered
the winds, the waves, the tide
and gravity, we shall harness for God
the energies of love.
Then, for the second time in the history of the world, man will have discovered fire."
-Pierre Teilhard de Chardin (1881 - 1955)

"Take away love and our earth is a tomb."
-Robert Browning

JAZZ MARATHON

The JVC Jazz Festival was in town, Jean and I took the plunge. Five acts over 7 hours, egads.

Worth it.

The line-up included Gerald Albright, Jeff Lorber, Richard Elliot, Lee Ritenour,
Rick Braun, Dave Koz, Wayman Tisdale, Jonathan Butler and drummers Rayford Griffin and Ricky Lawson, all heavies in the jazz and music scene.

Wayman's a former NBA player (and all-star I think). He turned his passion for music into a post-NBA career. Plays a mean bass guitar, clean tones and grooves hard. He's legit now. The show ended with Earth Wind & Fire's cover, "Can't Hide Love," which I was hoping they'd play. I was up off my seat. Last Friday we had two free tickets to see EWF at the same venue but we couldn't use them because we were travelling to Disneyland. I actually considered leaving for L.A. right after the show and driving through the night. It pained me not to see them but I had to get my little girl to the Happiest Place on Earth.

Gerald Albright plays a mean axe, they were doing a tribute to Grover Washington Jr. A definite crowd pleaser.

The main reason why we went to the show was to see Jonathan Butler, one of my all time favorite artists. I've been waiting for him to play in the Bay Area. He didn't disappoint. Classical guitar, smooth vocals, soulful and spiritual, entertaining savvy.

One of my life's edicts is "Do What You Love." Listening to good music that moves me is one of them.

TIME OFF

I took an extended leave from work starting today. They were totally supportive and kept my status open with an option to come back on my own time frame.

I want to use this time to spend more time with Gilly as well as take care of other personal, medical and legal things and just doing things that I love to do. Gilly will still be in school for the next two weeks and then we'll take her out for the time being. I'm hoping to take a personal retreat and get away for a few days by myself and do some reading, writing and riding. I'm also going to try to meet with other doctors and get a second opinion on my course of options.

Hopefully things will turn out well but I didn't want to regret not taking the time off.

THE HAPPIEST PLACE ON EARTH

I love Disneyland so I couldn't wait to bring Gillian for her first time. G was a little overwhelmed at first but her expressions of wonder and joy on "It's a Small World" were worth the trip. She took pictures with and got autographs from her favorite princesses Snow White and Belle and also Stitch and Minnie. Other characters she was scared of.

Her favorite part of Disneyland (actually California Adventure) was running through the water fountains. Hundreds of dollars and and hundreds of miles travelled and she's having the most fun just getting wet. We could have stayed home and turned on the sprinklers. Actually, there's Disney Playhouse and A Bug's Life 3D Adventure and lots of other things for kids so she had a blast. She was so cute wearing those oversized 3D glasses and swiping at the air in front of her trying to catch the 3D bug.

Gillian wasn't feeling well so her planned afternoon nap back at the hotel turned into an overnight sleep. So I ended going back to Disneyland by myself in the evening. It was fine by all parties. I was like a kid again, waiting in line on rides, walking through the crowds, stopping on Main Street to watch the fireworks, combing through dozens of Disney trinkets and T-shirts. I loved it.

Next fall we're having a big family reunion at Disneyland, with most of my relatives flying in from Hawaii. Can't wait.

SOLD OUT

I went to Niketown in the city to pick up some more Lance Armstrong LiveStrong wristbands and they were all sold out and not expecting any more in.

Apparently they have become quite popular since celebrities and pro athletes started wearing them. Some people are selling them on ebay for a ridiculous profit (the wristbands are to raise money for cancer research you losers.)

I see them a lot more now. Luckily I have a few extra ones. I wear mine every day. It's a very personal reminder to me to squeeze the life out of everyday I've been given. A very simple, inexpensive object but one of the most precious things I own.

ZOO

I brought Gillian to the San Francisco Zoo today. With everything that's going on with my health, it was one of the most memorable days I've ever had, just being with my girl who I love dearly.

BAD NEWS

My latest routine blood work test came back positive, which means the cancer (Chronic Mylegenous Leukemia) is back. I was in remission for about a year. There was a 5-6% chance that the cancer would mutate and develop a resistance to the treatment (Gleevec).

They've doubled my dosages to aggressively go after the leukemia and in about a month I'll have another bone marrow biopsy to see if I've responded well or not. Experiencing nausea, headache and fatigue though nothing debilitating.

If the tests show no traces of leukemia cells I'll remain on the present treatment and things will be back to "normal". If there are still cancerous cells remaining, then I'll meet with Stanford doctors to discuss and prepare for a bone marrow transplant. I’m having my brother and sister tested for a donor match.

My oncologist is hopeful that I’ll respond well to my current treatment and there won’t be a need for a transplant at this time. We’ll face that when/if the time comes.

It was quite a shock but I've known there was that possibility so I've been preparing myself in some ways. We're doing okay, feeling strong, positive and hopeful as much as we can though Gillian senses something is not quite right.

Time to brawl.

QUOTABLE

Kid's say the cutest things. Last night while putting Gillian to bed I went out to get a glass of water, hoping she'd be asleep by the time I came back. After five minutes I came back to find her under the covers, hide and seek style, waiting for me to come back to surprise/scare me.

I said to her "you were hiding under there the whole time I was gone?" She replied, "yeah, I was waiting, I can't breathe under there."

Too funny.

The other night she fell asleep on her side, hands together supporting her face. She looked like an angel. I just sat there and watched her sleep peacefully and suddenly found myself tearing up, she looked so beautiful.

I don't know where that came from, but I think it welled up because of how thankful I am to finally have such a precious gift, and that I'm around to watch her grow up.

MOVIE NIGHT

Saw Bourne Supremacy starring Matt Damon. We've read and loved Robert Ludlum's books that the movie is taken from, and we loved the first movie.

If you liked the first movie, you'll like this one. "Realistic," plausible action, intelligent cat and mouse games, anchored with emotional weight. Not an easy combination to achieve. Punishing fight and car chase scenes, up there with the best, Ronin. Dissimilar to the Bond movies of the genre. Bond is glitzy, over the top, tongue in cheek, rogue and debonair. Bourne is gritty, savvy, resourceful, everyman and conflicted.

HAMMERHEADS

Today I finally found the courage to ride with the Benicia Bike Club, our city's local club. I see them all the time, a pack of them riding in their red and yellow jerseys on the same road I train on. They've invited me to ride with them on different occassions, all of which I've declined, until today.

The "President" of the club assured me that there are different ranges of ability on the team. I would soon find out that those ranges are "fast" and "faster." Some of the guys actually race. I wasn't worried about them, I just wanted to keep up.

We started out with a "friendly" pace that soon kicked into a competitive "race" pace. Gaps started forming among the riders as the fastest riders pushed far up the road. I was doing all I could just to hang on to the wheel of the guy in front of me. These guys were really fast, I was impressed. They dropped me after only four miles but I was exhilirated. I've never gone that fast for that long.

What may have been embarrassing for others was motivating for me. Know I knew what I was up against and what I needed to do to get to the next level.

So here's the plan: back to spin class, watch the diet, get strong and ride a lot. I promptly went home and said, "Hon, I need a new bike." (Even though I have a nice bike that's practically brand new. It's one of the symptoms of being a cyclist, the perpetual search for the fastest, lightest, newest bike.)

There's hope, we met one of the guys who use to be at my level, the pack would leave him in the dust. Now, two years later, he's one of the strongest and on that day, he was the first to the finish.

GRADUATION DAY

Our daughter Gillian is 3 1/2 years old, and "graduating" from her preschool to the next "grade."

This is our first taste of school events so I was pretty excited to attend. This is the reason we parents spend hundreds of dollars on digital cameras and camcorders (I borrowed my brothers to record the event.)

She was so precious in her pint-size red cap and gown marching and singing with her classmates (though she wouldn't keep her cap on.) (NOTE: if someone knows how to post pictures on this blog, please contact me, my latest attempts were futile.)

They sang, danced, got awards and a completion certificate. At the end of the ceremony, they raffled off toys and other prizes. She/we won a gift certificate to use toward next season's tuition. Of course that didn't impress Gillian too much, she wanted a TOY! (to stave off a meltdown I later took her to Toys R Us to buy her a graduation gift, where she picked out a Lil Bratz doll.)

Here's the kicker, during the ceremony, right when her name is called to pick up her diploma, the camera battery DIES. Un-be-lievable.

Well, at least I have her other classmates doing ballet and cheerleading, sheesh.

So much for posterity sake, though at least we can frame her diploma along with her picture.

Eighteen years from now, we'll be watching her in another red cap and gown, graduating with honors from Stanford.

LEARNING CURVE

I started to list some of the things I've learned (or am learning) ever since I was diagnosed. I stopped at about two dozen, here are some of them:

- Figure out what the important things in your life are and give your time, energy and attention to them.
- Never leave things unsaid.
- Put fear into perspective, don't let it immobilize you, just do it.
- Spread the love, life's all about the "L" word.
- Stay healthy, be around to play catch with your kids.
- Spend a part of everyday doing something you love. Feed your soul & spirit.
- Learn how to say no, you don't have time to do everything.
- Safety is overrated, take risks. Security and comfort can limit new opportunities and experiences.
- Let go. Forgive. Bitterness and anger is wasted emotional energy.
- It's never too late to be what you might have been. Find a way, make it happen, follow your heart.

Question: You only have two years to live. What will you do with these last years?
Question: You just won the $100 million jackpot. What will you do with the rest of your life?

GLORY DAYS

About a dozen of us got together for our monthly basketball get together at the city gym. We always have a great run no matter who shows up and today was no different. Some of my "nephews" (my cousins' sons) are in town for the summer and came to play. These are kids in their teens and early twenties.

I'm amazed at how good they've become along with the inevitable comparisons of me and some of the crew when we were their age. (Of course there is no comparison, we would have thumped them bad.) Back in the "glory days" we used to spend most of the summer playing ball wherever their was a game. The heat radiating from the blacktop didn't matter, we would play for hours on end against all comers. Nowadays my playing time is much more calculated, restrained and savvy. With age comes wisdom.

After the game some of the older cousins started teaching the younger ones about different aspects of the game that they might have overlooked, both "tricks" and fundamentals. In particular, one of my nephews really showed promise and I asked him if he's trying out for his high school team (he's a junior). Being that his school is usually one of the best in Southern California, he was a little uncertain because of his size and other seeming difficulties. I told him that he should try out anyway for the experience even if he doesn't make the team, you never know what kind of growth spurt he may have the following year. I also told him that when I played in high school I wasn't the tallest but made up for it in other ways. (I was the team captain but our team was pretty mediocre, I'll blame it on poor coaching.)

I hope he trys out. These types of things at his age will leave a huge impression on him in the years to come.

It seems the older people get, the more they talk about the good ol' days or the "glory days." I think it's okay when those good times are stored away in people's memories to be relived as a catalyst for living today. I guess I mean to say that looking back at our good memories bring joy and energy for creating new ones today.

TIME

My brother finished transferring my wedding video from VHS tape to DVD. I can't even recall the last time I watched it.

It was very poignant to basically watch a moving time capsule from 15 years ago, November 4, 1989.

Of course the first thing you notice is how young (and thin) everyone looks, like we were just kids. Some people had a lot more hair back then, and I'm not only talking about the groom (side note: in informal polls throughout the years, the overwhelming majority say I look better without hair, than with it. Vote now.)

As the camera scanned the audience we were struck by the effect time had on people, not necessarily aging, but seeing where these same people were 15 years later, today.

Some are no longer with us on earth, having passed away, their image on video a reminder of their more vibrant self.

Some couples are no longer together, the strain of divorce having taken it's toll, once happily married, now living apart, out of love.

Some have been out of touch all these years, their well being and current residence unknown to us.

Ironically, the recorded video of a joyous occasion was tinged with sadness and regret on what once was and now is no longer, a reminder of the brevity of life and to live each day to its fullest.

PLAYLIST

Here's what's getting the most play on my iPod these days:

Fred Hammond, "Somethin Bout Love" - I listen to this constantly, new school gospel. Favorite cut, "Lord We Need Your Love" with guest artists, Marvin Winans and Brian McKnight.

Alicia Keys, "The Diary of Alicia Keys"- a good friend turned me on to her new album, it gets a lot of rotation. Soulful, passionate. Favorite cut, "If I Ain't Got You." Top Ten All Time.

Chopin, "Nocturnes" especially No. 15 in F minor and Vivaldi's "Four Seasons" - keeps me centered and renewed.

Earth Wind and Fire, any album - my all time favorite band.

THE CULT OF iPOD

I love my iPod (right up there with my Tivo.) To carry my entire music collection with me wherever I go and call up my favorites songs, not to mention lecutures and seminars, is sublime. It's dangerous that iTunes makes it so easy to download those songs that you "need." I've got about 2000 songs on it so far, which is nothing compared to some friends of mine.

When I see others on the BART or walking in the city with their white headphones, there's that knowing look, a kind of "secret handshake" look, like we have something that others don't know about. Of course everyone knows about it, it's driving Apple's profits right now. And most have seen the "dancing" ads and commercial. Steve Jobs is genius.

It's like having your own personal soundtrack of your life. I like to ease into my mornings so the morning BART commute is usually some classical stuff or meditative groove. But once I ascend out of the station into the bustling energy of the City, I switch to my thumping urban mix or old school jams. After a hard day's work, the commute home is usually jazzy stuff and R&B to wind down and get ready for my favorite part of the day, walking into the house to be greeted by "Daddy!"

Now it's become ritual when leaving the house: keys, wallet, cell phone and iPod.

SPIDERMAN

Saw the real Spiderman today, not Tobey Maguire at theaters, but Joel Cortez, my brother-in-law at the rock climbing gym, Touchstone Concord. He works at their gym in San Francisco and came down to take a few of us indoor rock climbing.

It was fun but harder than it looks. We took our turns on various routes than watched Joel show us how it's supposed to be done which made us look more like the amateurs we are. According to Joel, it's not about brute strength but also agility, center of gravity, positioning, and using your legs not only your arms and shoulders. When he's not climbing indoors, he's traveling around to National Parks across the country to do the real thing outdoors.

We plan to climb again soon.

COUNTRY

Well my reflective side hit me harder today than yesterday. I think it was precipated by my calling my oncologist to set up my next appointment.

I can't believe it's been a year. Somtimes it's so surreal, like it never happened. Other times it's so vivid like it happened yesterday.

Here's the lyrics to a very timely song, "Live Like You Were Dying" by Tim McGraw that my friend Joe brought to my attention. This is a first, I'm actually posting a country song on my site. Who'd have thought that would ever happen?

He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
how's it hit you when you get that kinda news
man what'd you do

and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named BluManchu
and I loved deeper and I spoke sweeter
and I gave forgiveness I'd been denying
and he said someday I hope you get the chance
to live like you were dying.

He said I was finally the husband
that most the time I wasn't
and I became a friend a friend would like to have
and all the sudden going fishin
wasn't such an imposition
and I went three times that year I lost my dad
well I finally read the good book
and I took a good long hard look
at what I'd do if I could do it all again

Like tomorrow was a gift and you got eternity to think about
what'd you do with it what did you do with it
what did I do with it
what would I do with it?

Sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named BluManchu
and then I loved deeper and I spoke sweeter
and I watched an eagle as it was flying
and he said someday I hope you get the chance
to live like you were dying.
To live like you were dying
To live like you were dying
To live like you were dying
To live like you were dying

CARPE DIEM

One year ago today I received the results from my latest bone marrow biopsy. The tests came back negative, my leukemia was in remission.

So July 8 gets added to my list of most important dates along with birthdays, Christmas and my anniversary, among other dates. I'm thinking of something to do or a tradition to start to remember the day. A party of some sort seems to be in order. Last year, after hearing the news, some of the boys spontaneously came by the house with champagne and cigars. It was my first stogie, and along with the champagne, just finished Japanese buffet, not to mention my medication...well, I practically slept in the bathroom all night.

I took the day off from work today and since Jean has the week off, we had a nice breakfast at the cafe down the street. I thought I'd be in an overly reflective, contemplative mood today but nothing more than usual. I actually feel like taking a bike ride or going to see Spidey 2. I'm sure I'll actually do some things around the house, especially with Jean in one of her focused, "Home Depot" moods, look out. Ahh, such is life.

And what a life it is.

"Cancer might rob you of that blissful ignorance that once led you to believe that tomorrow stretched forever. In exchange, you are granted the vision of seeing each day as precious, a gift to be used richly and wisely." -US National Cancer Institute

LIVE STRONG

Well, the Tour De France has started and Lance Armstrong is bidding for his unprecedented sixth yellow jersey. The TDF along with March Madness, the Masters and U.S. and British Opens are events when I get to use my "Daddy Gets Control of the TV" privileges. Not even the NBA Finals get that honor (especially after this year's Lakers fiasco, another post.)

I went down to Niketown last week during lunch and picked up some yellow "Live Strong" Lance wristbands. It's to raise money for the Lance Armstrong Foundation and show your support for Lance and cancer patients and survivors. Of course you'll see Lance along with other riders on the Tour sporting the wristband. Other Nike athletes are also wearing theirs in support.

When Jean gave one to a coworker who had supported my century ride, she found out that her brother is a huge Lance fan and he and his wife are actually going to France to watch the tour. Very cool, I'll need to put that on my Things To Do List.

I met someone at work after he spotted me wearing mine. He's a cancer survivor and cyclist who actually rode in Lance's Ride for the Roses charity ride in Texas just weeks after chemo. So far he has five(!) bikes and also rides to work. When I'm out in the city during lunch, I get questions about it and also "nice wristband" remarks from other people in the know.

Gotta represent, you know.

CONTACTS

I picked up contact lenses today. Once I get used to willingly sticking a small, foreign object into my eyes, I can play ball, swim and bike without being impeded. I can also buy sunglasses without the added expense and hassle of prescription lenses. (Reminds me of that Seinfeld episode where George loses his glasses and has to wear his prescription swimming goggles instead. Hilarious.)

I'll keep by specs though for when I want to look smarter, err, more intelligent, than I actually am.

ENJOY YOUR DAY (quote)

“A day is more than a passage of time - it is a passage of life … Each day enters, opens its doors, tells its story, and then returns above, never to visit again. Never - for no two days in the history of the cosmos will ever be the same.” From the Lubavitcher Rebbe.

TAHOE CENTURY

What a great weekend and a great ride, 100 miles around Lake Tahoe. We finished our ride in about 9 hours on a beautiful glorious day.

The NUMBERS:
- 3000 riders, 1900 riding for Team In Training
- $6.5 million raised for cancer research, $65,000/mile

The HIGHLIGHTS:
- Speaking to hundreds of participants from around the country, thanking them for their commitment to the Cause
- After my speech, a lady who is an 11 year cancer survivor, gave me her yellow, Lance Armstrong "Live Strong" wristband for me to wear during the ride
- Meeting Alan and Charlene, who rode in their first century in honor of their 11 year-old son, Andrew who is fighting leukemia
- Meeting Kai, who after crashing at 55 miles, patched himself up and finished the ride. He's nails.
- Seeing my teammates finish their first century, especially by buddy Noel
- Breathtaking view of the lake, with snow capped mountains, and boats gliding through white capped waves
- Pacelining at 25 mph with a stupid grin on my face
- Bombing the descents at 42 mph
- Popsicles at the top of the 11 mile climb up Spooner Summit
- Hearing the collective gasp of other riders when someone inadvertently knocked over someone's $8000 carbon-fiber Colnago Anniverary Edition bike
- Having 19 of my friends and family there to cheer us on, with noisemakers, signs and lots of love. They rock.
- Hearing my 3 year old daughter Gillian saying she wants to ride with me on the bike
- Getting to celebrate Jean's 40th birthday, also on the day of the ride

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.

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.

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

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