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What can Don Baylor teach us about living with myeloma?

Posted on June 24 2013 by Pat Killingsworth | 709 views

Former baseball great and active hitting coach for the Arizona Diamondbacks, Don Baylor, was one of the featured guests on Thursday’s Blog Talk Radio broadcast.   But as I processed all I heard and shared Thursday night, the thought occurred to me that many of my readers may not realize who Don Baylor is, and why it was a really big deal that he spoke with us last week.

First the basics.  Don was born in Austin Texas in 1949.  He became a major league baseball in 1970 at the young age of 21, joining the Baltimore Orioles.

The American League’s Most Valuable Player in 1979, Don ended-up with some pretty impressive statistics: 2,135 hits, 360 home runs, and 1,276 runs batted in.  He played for 19 years, mostly for the Orioles.  He then managed the newly formed Colorado Rockies for six years, winning Manager of the Year honors in in 1995.  Don then spent three years as manager of the Chicago Cubs (2000-2002).  He has been a hitting coach ever since, including 2004; the year he was diagnosed with multiple myeloma.

Don has always been open and honest about having cancer as he has continued to work and coach.  But while he has never shied away from discussing his cancer, Don hasn’t exactly allowed himself to become the face of multiple myeloma.  Best I can tell, there are several reasons for this.  We can learn a lot by examining why.

While talking with Don Thursday, I realized how difficult it was–and still is–to coach in a high profile sport with an incurable cancer.  I’m sure a lack of understanding hurt his chances for promotion.  He was a very effective manager, but hasn’t been offered another managing opportunity since his diagnosis back in 2004.

Co-host Matt Goldman asked Don directly if he felt he had been discriminated against over the past ten years. “No.”  Don answered.  But there was the slightest hesitation in his voice.  How he has been able to continue working is a testament to his abilities; not only physically dealing with treatment and complications, but also with the stigma of having cancer.

When Matt asked him if he would like to Manage again, Don didn’t hesitate, answering he would.

Check-out this revealing interview Don did with Boston.com sports writer, Nick Cafardo, in 2010.  Turns-out myeloma isn’t the only possible impediment to managing again:

Baylor is feeling skipped over in managerial mix

Don Baylor 2

Don Baylor reads the names of those being considered for managing jobs and he wonders, why not me?

Baylor, 60, a veteran of 19 years in the majors and a former American League MVP, managed the Rockies and Cubs, but that seems like an eternity ago. He was 1995 Manager of the Year in the National League and is now the Rockies hitting coach.

There are four African-American managers in baseball, and three of them — Dusty Baker in Cincinnati, Ron Washington in Texas, and Jerry Manuel with the Mets — have their teams in or near first place. The fourth is Cito Gaston in Toronto.

Baylor said the last time he even interviewed for a managing job was in 2004 with the Phillies, who hired Charlie Manuel. He has managed 1,317 games in Colorado and Chicago but can’t get an interview.

“It’s not lack of experience,’’ said Baylor. “I have experience. I have the same desire to be on the field and to help an organization put together a winning strategy and work with a GM that has the same goal and philosophy.’’

Could it be a health issue teams are wary of with Baylor, who was diagnosed with cancer in 2003?

“The cancer that I had was multiple myeloma, a blood disorder,’’ said Baylor. “Mel Stottlemyre has it. Geraldine Ferraro has had it. It’s something you live with and go on. I’ve had control of it the last four or five years. So I’m going to take that excuse away from them, because my doctor’s told me if he has to write something for me, he would.

“When you’ve managed for nine years or so and when you’ve been the Manager of the Year in the National League, there are no other issues whatsoever. None.’’

While Major League Baseball strongly encourages teams to conduct an interview process, one that includes minority candidates, Baylor doesn’t even see that anymore.

“I grew up in racism, and I’ve never used it as an excuse. Never once,’’ he said. “And I don’t like to get into that.

“What I see now is that the interview process really doesn’t exist anymore. That’s what I see.’’

By that, he means that general managers and team presidents tend to bring in candidates they know and feel comfortable with rather than interviewing someone they’re not familiar with — someone who might blow them away.

Baylor, who went 627-689 in nine seasons as a manager, was out of baseball for two years before accepting an offer from former Rockies manager Clint Hurdle to be hitting coach last year.

As an ex-Oriole who was schooled under Earl Weaver and Frank and Brooks Robinson in the Oriole Way, Baylor became one of the best leaders in the game among players. He was certainly that on the 1986 Red Sox, putting out brush fires and fostering a cohesiveness on a team that nearly won a World Series.

He is also battle-tested from his experience with the Rockies (1993-98) and Cubs (2000-02).

“I always managed the talent that I had,’’ said Baylor. “In Chicago, they started bringing in a hundred million players after I left. Not before.

“A couple of No. 1 picks they thought were ready to play in the big leagues weren’t ready to play in the big leagues. We had Bobby Hill, Corey Patterson, and they just weren’t ready at the time.

“I’ve been in just about every situation as a player and coach and manager,’’ said Baylor. “I’ve been in the playoffs, World Series, and I know how to get there.

“I took this [Colorado] team to the playoffs early and I know I’m capable of going out there and managing again. I just need someone to give me the opportunity and give me serious consideration to sit down after an interview.’’

He was never considered for the Rockies job that Jim Tracy now holds, but he understood, given that he’d already managed there, albeit under a different regime.

He’d love a chance to manage in Baltimore, where Dave Trembley has already been replaced this year by Juan Samuel, but when candidate names are mentioned, he’s not among them. It was current Orioles president Andy MacPhail who fired Baylor in Chicago.

“That’s where my heart is at,’’ said Baylor. “That’s where I learned to play the game. It’s tough to see the struggles they’ve had there. The AL East is now three teams.

“I know it’s been difficult for the great fans who supported that team for so long and grew up in the tradition there.’’

In his years away from managing, Baylor said there have been changes in the way a manager must run a team.

“It seems like there’s more younger players who get to the big leagues quicker,’’ he said. “Coaches have to teach more and managers have to teach more.

“There are a lot of things I see that I would change. No one takes infield anymore, but I would take outfield. I just don’t see outfielders throwing at all. They don’t throw anybody out. They miss the cutoff man. They play catch, and that’s about it. They don’t really strengthen their arms.’’

The Rockies seem to have a great chance of getting into the postseason if they can make one of their late-season runs. Sometimes a coach needs exposure like that to get him back in the managing mix. Baylor hopes a third chance is still in his future.

The interview is more than three years old, so I hope Boston.com doesn’t mind me reproducing it in full.  I feel it’s very revealing.  And did you read the very end?  One thing is certain: Don Baylor knows baseball!

Next, I’m going to run a more recent interview I found on MLB.com.  Read carefully.  It won’t take long for you to realize Don knows a lot more about baseball than he does multiple myeloma:

Baylor leading fight against Multiple Myeloma

D-backs’ hitting coach talks about raising money, his journey in Q&A session

Barry

 

Don Baylor 3

Don Baylor is a Multiple Myeloma survivor, having been diagnosed with the disease in 2003. (David Zalubowski/AP)

PHOENIX — Don Baylor is a former star baseball player and manager who is now the hitting coach of the Arizona Diamondbacks. But more importantly, the man they simply call “Groove,” is a Multiple Myeloma survivor. And in that, he is way beyond the curve.

The mean average of living with a cancer that attacks plasma in the bone marrow is five years. Baylor was diagnosed with the disease when he was a coach with the Mets in 2003. He is now in the process of raising $100 million for the Multiple Myeloma Research Foundation.

“The regular cancers have had so much money thrown into the pot, and like Multiple Myeloma, we still can’t find a cure,” Baylor said this week before a game at Chase Field. “This is a specialized cancer. Maybe we can bring up awareness for Multiple Myeloma. Prostate cancer is men. Breast cancer is women. This can strike anybody. It skips one person and gets another. You don’t even have to be a certain age to get this.”

According to the American Cancer Society, one in every 149 people has a chance of contracting this deadly disease. Former big league pitcher and heralded pitching coach Mel Stottlemyre is also a longtime survivor. But it has taken the lives of such high-profile patients as one-time vice presidential candidate Geraldine Ferraro, baseball’s Vern Ruhle and Moe Drabowsky, hockey coach Roger Neilson and basketball’s Bill Musselman, Flynn Robinson and Phil Smith, to name a few.

After working in the cages with a number of D-backs hitters, Baylor, who will be 64 next Friday, stopped to talk about his journey.

MLB.com: So tell us about the fundraising effort.

Baylor: We’re trying to raise money to develop a system where doctors all over the place are able to share information. That’s the hardest part. East Coast, West Coast, North, South so everybody can put this data together to come up with something collectively. It’s almost like a second opinion, a third opinion, a fourth opinion. It’s something that hasn’t been done. Sometimes doctors get their patients and hang on to them. They don’t find out what’s out there that maybe can help.

MLB.com: There can’t be that many Multiple Myeloma patients that there isn’t a database with everybody in it. According to the American Cancer Society, 22,350 new cases have been recorded. Overall, 10,710 have died.

Baylor: You’d think that that’s the way it would work, but that’s not the way it has worked.

MLB.com: So basically, you want to put together a database.

Baylor: Yes, basically. Not like the one the government has, one that can save lives. It’s getting a little dicey. You have to get funding for that. It doesn’t come from the government. You have to do it yourself.

MLB.com: So how far have you gotten in those fundraising efforts?

Baylor: About halfway. Mel Stottlemyre will also be a representative with me. It’s something that’s so important. I coached with Vern Ruhle. He lost his life to Multiple Myeloma at 55, a really young age. Maybe something could have been done. Not aggressive, but maybe with some other opinions. I’m not saying anyone should change doctors, but sometimes another voice is really needed. I’ve been involved with Cystic Fibrosis since 1978. The thing I’ve seen with kids, who were 8 and are now in their 30s, is really something. So I know this kind of networking works. We’re going to find a cure for Cystic Fibrosis here shortly.

MLB.com: So you’ve had Multiple Myeloma for nearly a decade now. Mel was diagnosed in 2000. That’s double the median time for survival.

Baylor: I just manage it and live with it. It doesn’t restrict me from doing anything. I just go about my daily routine. When I’m in Los Angeles, I’ll go to the City of Hope, because that’s where my doctor is. He suggested that I also go over to the Mayo Clinic in Phoenix and get another doctor involved just so we can collaborate. They’re both on the right page. It’s something we’re proceeding with.

MLB.com: How is Mel doing?

Baylor: He was a little under the weather. I talked to Mel Jr. during Spring Training. He said his dad is back to being ornery again and ready to go fishing again. So he knew he was on the rebound again.

MLB.com: So in the 10 years since you were diagnosed, have you seen any improvement in the treatment of this? Are they any closer to a cure?

Baylor: Yes, I’ve seen improvement with it. It’s just like my mom, Lillian; she died at 59 of colon cancer. And the things they have today for colon cancer, they didn’t have in 1989. Same thing when I started. Mel had turned me on to some people at Sloan Kettering in New York. They were great there. They suggested the City of Hope out in Southern California where I was going to be. The doctor out there has been great. So I’ve seen the progression that has been made, because of a lot of the things that are in the pipeline now that were not in the pipeline in 2003 and ’04.

MLB.com: What’s new in the pipeline?

Baylor: There’s a drug regimen you can take: Revlimid (Lenalidomide). Twenty-one days on with a steroid. You can take Dexamethasone, another kind of steroid. There are days of rest. I know the late Geraldine Ferraro, she was in a clinical trial for Velcade. She did that for awhile. She was a little older than I was. So I don’t know how aggressively the disease attacked her. I received phone calls from people who were afraid to tackle this. They didn’t know what to do. There are ways now of dealing with this.

MLB.com: Do they still do the stem cell transplants? That’s been a staple. I know you went through one very early on where they transplant your bone marrow to protect your bones from becoming too brittle.

Baylor: You have to have a match, and the bone marrow in my brother, Doug, was a perfect match. He’s only two years younger. Because it was a perfect match, they advised me to use my own if you can. So that’s what I did.

MLB.com: And the procedure is, they draw out the marrow, freeze it, radiate it and reinject it?

Baylor: Yeah, they put it back in. It was tough for me. You have to stay in the hospital afterward for 15 days in a bacteria-free room. Your immune system is zeroed out, pretty much. I’m an outdoors person anyway, so to be locked up for 15 days was pretty crazy. And once you’re out, if somebody sneezes down the hallway, you have to get out of there. You have to just watch yourself for awhile. You’re locked up in an airplane and have to breathe the air. There’s nothing you can do about that. You have to wash your hands a lot. In restaurants, there are more germs on menus than there are on shopping carts.

MLB.com: And what do they have to do as time progresses?

Baylor: There’s a bone marrow biopsy where they go into your hip, extract a bone and look at it. I did that again recently. That process was outdated, but now they can put you to sleep for 10-15 minutes and get a good read from you. My bones are absolutely hard. I was a Vitamin D milk drinker when I was a kid. My brother and I went through a gallon a day, it seemed like. That was a big help. A lot of times they look at the bones to see if they have any spots on them. That’s a breaking down of the bones. I don’t have that, which is good. My bones are healthy. But you have to look at the marrow to see if the disease is at bay or it’s slowed down or it’s smoldering.

MLB.com: There seems to be no rhyme or reason for this: why some people are healthy and others die.

Baylor: I imagine it’s an attitude. It’s a blessing from God. He leaves you here to tell somebody else, to help somebody else if they have it. I know my mom was very secretive about it when she had it. It was like no big deal. Back then, 1989, you just really didn’t know. You wanted to savor life and things. And then it just overtook her. My dad, George, just passed away. He was 85. He lived a long life. But you want them to live longer. You always try to help if you can. You just have to take care of yourself and give back. That’s the whole thing. That’s what’s important to me.

Let me be clear.  I’m not trying to make Don look bad.  On the contrary, I love his heartfelt, down-to-earth approach.  I think it will really connect with a lot of readers–especially baseball fans.  But by mid article, it’s clear the Don knows a lot more about baseball than multiple myeloma!

And that’s one of my points.  Don was an exceptional athlete.  He has faced cancer with an unstoppable spirit.  Don has battled racism and discrimination; not only because he’s black, but also now that he’s living with cancer.

But like the vast majority of multiple myeloma patients, Don knows more about his job and other interests than his disease.  And that’s OK–Don is obviously in good hands.  No one expects every myeloma patient and caregiver to be a “myeloma geek” like me.

But the point I make repeatedly here–and in my column for the Myeloma Beacon–is that we all need to become more educated about multiple myeloma and possible therapy options.  Because there are so many different therapies to choose from, most medical oncologists can’t keep up.  And matching the right therapy to the right patient at the right time can made a big difference; not only for how long they live but for their overall quality of life.  I stress how you should seek-out a specialist to help make sense of and select the best treatment option for you.

Myeloma Cure Panel moderator, fellow Floridian Gary Petersen, has dramatic statistical proof that seeing a specialist can help you live longer.  You can find it on Gary’s blog,  MyelomaSurvival.com.

I’m not sure why Don has chosen to meet myeloma head-on now.  But his fundraising effort  in conjunction with the Multiple Myeloma Research Foundation (MMRF) is awesome!  Don is and has been seeing a specialist.   His celebrity–and the fact so many of his fellow African Americans are diagnosed late and under-treated–make him the ideal face of multiple myeloma.

But I am suggesting that professional baseball coach, Don Baylor, needs a myeloma coach if he is going to step up-front and represent us regularly in the media.  I’m sure his lovely wife and caregiver, Becky, will set him straight!  We were fortunate to here from Becky Thursday night, too.  Like so many caregivers, she seems to be the one asking questions and following blood work and test results.

My constructive, tongue-and-cheek criticism aside, I would like to thank Don on behalf of the myeloma community for all he is–and will do–for us.  Keep swinging, big guy!

Feel good and keep smiling!  Pat

 

7 Comments For This Post

  1. richard blustein Says:

    I totally disagree with your opinion that Don Baylor needs to be more involved with the myeloma community. First off,being a major league hitting coach is a full time job with almost as much pressure as a manager. There is no time to focus on something else. I think those of us who are not obsessed with this lousy disease are the ones who are best off. You certainly need to be aware of the options but if you can you need to get on with your life. I congratulate Don Baylor (and Mel Stottlemyre) for being able to do this.

  2. Pat Killingsworth Says:

    Read more carefully, friend. He is becoming a more active part of the myeloma community. Working with the MMRF has brought him to the fore. His down-to-earth approach helps make him approachable. With so many African Americans being treated late or not at all–and then not getting to a specialist in time or at all–I’m glad he is stepping-up and becoming more visible. Its all good!

  3. richard blustein Says:

    “But I am suggesting that professional baseball coach, Don Baylor, needs a myeloma coach if he is going to step up-front and represent us regularly in the media. I’m sure his lovely wife and caregiver, Becky, will set him straight!”

    This is the part I objected to. There should have been no criticism in this posting.

  4. Pat Killingsworth Says:

    Fair enough. And if he wasn’t spending more time on behalf of the MMRF I would agree. He’s a bright guy. He’ll get it figured out.

  5. richard blustein Says:

    Pat, he does not need to figure anything out. He seems like a real good guy and may be a borderline hall of famer.

  6. James Says:

    MM since 2000. Disease free! Never give up.

  7. Pat Killingsworth Says:

    What’s your secret, James?

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