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2000.04.11

An open letter to KUSA TV in Denver and the Board of Directors for the Komen Foundation.

This letter was originally written last fall. My wife’s health over the holidays prevented me from tracking down all the contacts to whom I wished to send this letter. Her health is much improved at the moment. She is off oxygen although her energy level is considerably diminished. I apologize for the delay and hope that my comments may still be of value.

November 22, 1999

Dear Ladies and Gentlemen,

I am writing this letter in the hope of initiating a positive change in the way breast cancer survivors are treated during Denver’s Race for the Cure event. I have shared this letter with organizations and people not directly involved with the Komen Foundation’s Race for the Cure in the hope that my experiences will assist them in avoiding some of the unfortunate trends I’ve observed with the Race for the Cure event in Denver.

I’ll open with a few words about metaphors, those powerful pieces of psychology we humans engage in to make sense of the world around us. In our personal lives, we arrange symbols and metaphors to create an environment that is pleasurable to us. These symbols may be anything: pictures of people, music, a style of furniture, wallpaper – just about anything. All these things help us feel comfortable and help us feel like we belong where we are. They also help us make sense of the world around us. When complex situations are explained in terms of metaphors they are easier to grasp. Marketing people have arranged symbols and metaphors for centuries in an effort to get people to think about buying things or accepting ideas that are profitable to their business interests. Metaphors are a powerful force and often they are outside our awareness.

My wife and I have been dealing with breast cancer for the past four years. As much as I dislike violence, the operating metaphor here, the language that best describes the situation, is one of war. For me, it’s a battle between hope and dispair. For Janet, it is a battle between life and death.

At the moment, it’s a little before 4 in the morning and there are signs that the enemy is on the move (It’s been about 12 hours since Janet’s latest chemotherapy treatment and she is restless, her head is starting to hurt.) The latest intelligence and scouting reports told us this might happen (Her oncologist’s report of the potential side effects from Tamoxifen and Taxotere, the latest weapons in a battle we’ve been fighting over four years now, and her previous experiences without estridiol.) The information couldn’t tell us when the battle would start or even if it would start (They are always presented as “potential” side effects that have occurred in such-and-such a percentage of women.) The information couldn’t tell us how vigorous the attack would be or how long it would last. Our advisors (oncologists) couldn’t tell us what weapons we could use or how effective they would be.

At the Race for the Cure this past October you certainly presented a different metaphor for what people experience when breast cancer becomes a part of their lives. Your metaphor was most clearly stated with your choice of music at the procession following the Race for the Cure this past October. The metaphor specifically contained in the Queen song is about struggles inherent in the entertainment industry. It mentions fame, fortune and curtain calls. Most generally, however, this song is associated with major league sporting events. Events with rules of fair conduct, penalties for unfair conduct, referees, time limits, clear boundaries, rules, points, winners and losers. Did anyone think about the message carried by the lyrics? “We are the champions, no time for losers.” Repeated over and over again, the message was less than subtle. I have no doubt this song was a deliberate choice. Someone decided to use THIS song over some other song.

By 5 am, we’re into the thick of this one. Janet’s headache feels like an axe placed squarely between here eyes. She can’t sleep, all she can do is cry. Untouched by Motrin or Tylenol, she’s at her dosage limit anyway and can’t take any more. Massage hasn’t help, either. Using what I’ve been able to discover about headaches from the Internet and my personal experiences, I suggest placing hot towels on her forehead, thinking that the heat may help the blood vessels in her face and forehead expand and thus relieve some of the pressure on her neurons caused by constricted blood vessels. We try this for an hour, cycles of replacing the cooled towels on her forehead with fresh hot ones. In between towel changes I sit on the cedar chest at the end of the bed. I look to the skylight for some sign of daylight but there isn’t any, just the pale, cold light from a moon just past full. I think about many things.

Eventually, my thoughts get stuck on a song. A single line from a song, looping through my thoughts over and over again. Damn, it’s from your selected anthem for the precession of breast cancer survivors at the Race for the Cure. “No time for losers." Janet moves a little and I snap out of it. I ask how she is doing. It actually begins to work! Janet is relaxing and has stopped crying. I can’t get this song you chose out of my head. The selection bothered me then and baffles me now. I decide not to dismiss this and instead send it to the back of my mind to mull over while I attend to the needs at hand.

That night, in that moment, you contributed to my despair. I am not the type to set and dwell on my suffering. I am the type who will seek to change my situation, and if I can’t, do what I can so that others will not have to suffer the same experience. It is this part of my nature that motivates me to write you and others to express my thoughts and feelings of how the Race for the Cure has been packaged and organized over the past few years.

The song selection struck me as a bit odd as I stood there that day before the steps of the City and County building in downtown Denver. I thought, "Peculiar choice to blast a Queen song played most often at sports events into a group of women wearing pink hats, each of whom look like many things except a major league athlete. Especially my wife! Janet needed oxygen support throughout the 5k walk and was sitting there on the steps with her little O2 buddy on her lap.” I asked a couple of the guys around me if they thought this was an odd selection of music and they agreed.

Janet at the 1999 Race for the Cure in Denver
Janet at the 1999 Race for the Cure in Denver

Your selected anthem unequivocally and unambiguously discards the experiences and discounts the efforts of those who have “lost.” “No time for losers.”, you blasted to the procession of breast cancer survivors and their gathered supporters. This is the song a guy would pick and I doubt the National Komen Foundation supports the message, just ask them about the “Bells and Silence for Remembrance.” In other experiences with the Komen Foundation, the term "race" has had a much larger meaning and wasn’t boxed in by the puny language of sports. The sports metaphor was reinforced by Kim Christiansen’s’ comment: “How fitting that we are gathered here where the Denver Broncos were gathered after their super bowl win.” Sports again. And just how is it fitting? Those guys went home to bright futures and lots of options. When the clock ran out, their contest was over and nobody died. This would have been true even if they had lost. We went home to continue the battle. Correct me if I’m wrong, but my sense is that by using the word “Race,” the Komen Foundation is referring to a larger context – a race between life and death. With the selection of this Queen song, someone has confined the word “Race” to the actual foot races found in sports events.

We attend the Race for the Cure to be involved with a community of people who are unfortunately walking the same path. It inspires us and removes a little of the crushing loneliness that is at times part of the burden. The problem with the sport metaphor is that the losers get to go home and play another day. In breast cancer, those your anthem calls losers go to the cemetery. The empty spaces left in the homes and hearts of those who love them exceed the simple bounds of three dimensions. “No time for losers.” Are these the words you want to be echoing around in such an empty space?

Here’s a suggestion for doing it different and better. Play the third movement from Respighi’s “Pines of Rome.” Or “I Can See Clearly Now” from either Roberta Flack or Jimmy Cliff. Maybe “Reach” by Gloria Estefan or “I’ll Stand By You” by the Pretenders, if it has to be rock and roll. Or, perhaps the most novel approach of all, ASK THE SURVIVORS WHAT THEY WANT TO HEAR! As beat up as these women are by both the disease and the current state of the treatment, find something that can heal a hurt or two. Something that lifts them up, not divides them into winners and losers. Leave them inspired, not depressed. Keep your focus. This event is about the women burdened by the pink hats, not your sponsors (just how many times did Adele and Kim mention “9 News” during their Race for the Cure show anyway? My subjective experience places the count between 15 and 20 times.)

How about a different metaphor: The breast cancer victims I know and love are pioneers. Individuals who have walked through fire and into places that make me shutter to think about going. They are unwilling travelers in uncharted territory.

In your chosen anthem’s metaphor, those that someday will stand in the “winner’s circle” will have gotten there via the experiences and efforts of the “losers” that carried them there. It is a vanishingly small percentage of researchers out there who ever take their own medicine. Remember this. Those aren’t lab rats participating in the clinical trials for Methotrexate, Tamoxifen, Adriamycin, Cytoxan, Herceptin, Navelbine, Taxotere or Taxol. Poisons so powerful that if I were ever caught carrying just 1 gram of one of these I would go to jail for 20 years. Yet during Janet’s chemotherapy treatments, I observe these poisons being dispensed like peanuts and fruit juice. “Cocktails” is what the hospital people call them. Those are not monkeys they put on tables to irradiate with more RAD’s than a normal person is usually exposed to in a lifetime. Treatment courses are decided by oncologist based on their experiences with the women they are treating. Nowhere can you find a universally accepted treatment plan. How little they know is evident in the number of different opinions you get. My wife’s case is particularly difficult. This past month, her primary oncologist consulted with five different oncologists and ended up with six different opinions (including his.) Her treatment course was mapped out based on a couple of general themes that emerged after these consultations.

I have a third degree black belt in Aikido, have unflinchingly faced a variety of scruffy individuals in dark places and worked my way through a number of dangerous situations. When I look deep inside myself, I cannot find any assurance that I could face the darkness that too many women have to face. Before a single pink hat, I humbly bow my head with deep respect and awe. The sea of pink hats I have the honor of walking with during any of the Komen Foundation’s Race for the Cure events flat out brings me to tears. Even as I write this, the memory is as strong as being there.

Perhaps the Komen Foundation will accommodate your choice in processional music by changing the wording on one of the pink pieces of paper they hand out for people to add names to and pin to their shirts. In stead of “In Memory Of” it can simply say “Losers.” To complete the experience, after everyone has left the 9 News sponsorfest and gone back to their private lives, perhaps you could blast another Queen tune to the empty park to recognize the losers – “Another One Bites the Dust.”

To all the survivors of breast cancer I say this: I choose to stand up and be counted as one who will celebrate your victories, grieve your loses and create a place in my heart and memory for those who have lost their battle.

There is a bit more to this picture, a few other oddities I’ve noticed that I’d like to state for the record.

  1. The logistics of how the Race for the Cure has been handled in the past three years has made me question what exactly I’m supporting by attending this event. This past year’s event had a few glaring problems. As I mentioned, Janet required oxygen support during her participation. It is very common for women who have undergone chemotherapy, particularly if it is high dose, to have compromised lung capacity. Yet, not more than 30 meters from the place where all the breast cancer survivors were seated after the procession, and not more than 10 meters from the path they walked to find their seat on the steps of the City and County building, was a power generator belching out diesel exhaust! I was watching Janet like a hawk for any signs that the exhaust was hurting her. Fortunately, the breeze mostly carried it away. It did blow the exhaust in our direction a number of times but quickly changed directions. Who ever decided to place the engine there wasn’t thinking about the survivors and the survivors needed luck to keep the air clear during the sponsorfest. Spend a few extra bucks and put that generator on a longer power cable so it can be parked on the other side of the building. Maybe the people contracted to provide the sound could donate the expense of providing the longer power cable. I’m sure they would be grateful if you would add them to the procession of sponsors.
  2. Have you ever stood on the steps of the City and County building during a bright, sunny day? With all that concrete, it gets hot and it doesn’t take much of a temperature to make it hot. October does not mean cool temperatures in Colorado. Here it is, November 14th and we’ve been breaking high temperature records. Some days have approached 80 degrees. Fortunately, for the breast cancer survivors, the Race for the Cure was run on a cloudy day so it stayed cool until the clouds started to break up in the late morning. Who ever decided to place the survivors there wasn’t thinking about the survivors. Lucky for them the powers that be provided a little cloud cover. Spend a few extra bucks and provide some shelter from the elements or move it back to the amphitheater across the way.

This was a problem at the 1997 Race for the Cure as well. That was a hot day. All the breast cancer survivors were kept waiting in front of the pink balloon arch for the sponsorfest down in the amphitheater to finish. (As I recall, that procession happened to an original music composition. Very well done.) That year, Janet was not very far out from her surgeries, first course of chemotherapy and radiation therapy. While waiting to be seated that year, she was getting weaker because of the sun’s heat. So were many of the recently diagnosed, some of whom were actually in the middle of their chemotherapy! The women in the line were calling to move and several of us from the supporting ranks were talking about uprooting one the nearby tents and holding the tarps over the survivors until the procession began. About that time it did. Once she was seated in the shade, Janet said she began to feel better. An e-mail from me to the Komen Foundation about this matter was never answered. I thought the organizers learned because the next year, 1998, the breast cancer survivors were seated right away before the sponsorfest began.

  1. One last observation about the logistics. Did anyone who help organize the 1998 and 1999 Race for the Cure notice the lines at the portable toilets? They were HUGE. Spend a few extra bucks and triple the number of available portable toilets. Raise the registration fee if needed.

I will watch very closely if any of these issues are address. If not, I will readjust my support to provide further resources to The Day of Caring (http://www.dayofcaringonline.org/) or the Cherubim Foundation (http://cherubimfoundation.org) and recommend that my family, friends and business associates do likewise.

Sincerely,

Gregory Engel

P.O. Box 5352
Centennial, Colorado 80111

Voice: 303-771-5497
Fax: 720-489-5141
E-mail: greg.engel@geckopad.com

This letter has been sent to the following people and organizations:

KUSA TV station in Denver, Colorado…

9NEWS
P.O. Box 9
Denver, CO 80201

Adele Arakawa
Jim Benemann
Heather Cabot
Dave Kaplar, Executive Producer
Steve Carter, Promotion Director
Kim Christiansen
Dr. Stephanie Clements
Heidi Collins
Ginger Delgado
Patti Dennis, Vice President, News Director (Reply: April 18, 2000)
Kyle Dyer
Heidi Hemmat
Dana Knowles
Anita Lopez
Roger Ogden, President, General Manager
Cheryl Preheim
Kathy Sabine
Ed Sardella
Lynne Valencia, Community Relations
Erica Wilner
Paula Woodward

Susan G. Komen Breast Cancer Foundation Board of Directors…

5005 LBJ Freeway
Suite 250
Dallas, TX 75244

Ruth Altshuler
Susan Braun, CEO
Nancy Brinker, Founding Chair
Norman Brinker
Linda Custard
Mary Elliott
LeSalle D. Leffall, Jr., M.D., F.A.C.S
Connie O’Neill
Linda Kay Peterson, Chairman of the Board
Barney Young

Denver Affiliate – Susan G. Komen Breast Cancer Foundation…

Race for the Cure
2465 South Downing, Suite 206
Denver, CO 80210

Nancy Olsen, Executive Director
(Reply from Lisa May, Closing Ceremonies Committee: April 24, 2000)

Day of Caring…

1600 Pierce St.
Denver, CO 80214

Elise Spain

…and has been posted on the Internet at: http://weblog.javazen.com/index.php?p=11

Any response to this letter by any of the people to whom this letter was sent will also be posted at this location on the Internet and linked to this letter. If nothing is posted, it will be understood that there were no responses.