Thank You for Listening Generously

“When you listen generously to people they can hear the truth in themselves, often for the first time.” – Rachel Naomi Remen

I rarely write postings for all of my blogs at the same time, but today, I am doing just that. If you visit any of my blogs (www.karengberger.blogspot.com , www.katiescomfortersguild.blogspot.com , www.katiegerstenbergerendowment.blogspot.com  and www.abundantlivingaftercatastrophe.wordpress.com ) this is what you will find.

It’s been a deeply moving season here. The end of summer brings with it memories of Katie’s passing (August 16th), my parents’ anniversary (this year they marked 60 years of marriage on August 17th), the start of the school year (David is a junior in college, studying in Italy for a semester; Katie should be a senior in high school, looking at college choices and enjoying her last year at home with friends – but she is not). It also marks the anniversary of the start of her illness, her diagnosis, and the 10 months which were a kind of living hell, leading to her passing. The 10th of October, the day we entered the hospital “for tests” and didn’t come out for months; October 13th, the day we found out that it was cancer (though not what type) and Katie’s first round of chemotherapy began.

Gregg let me know during this time that he is not comfortable hearing the news, in detail, of all of my involvement in the world of cancer. He can take only so much of it. My work does not give him solace the way it does me; it simply reminds him of what took our daughter away. When I asked him if the advances in research, cures and awareness make him feel better, he replied, “No.” None of it will bring Katie back, so it’s not a comfort to him. Even though it comforts me, I need to filter some of what I ask him to participate in. Fair enough.

Shortly after my book reading event at Eagle Harbor Books in September, Gregg and I attended the Ben Towne Foundation’s annual BENefit. We were “table captains,” which really means that we gathered interested family and friends and all sat together for dinner. The Foundation makes it so easy to “host” a table that I wouldn’t feel right calling it “hosting.” That was the second cancer-related event in a month’s time, but Gregg loves the Townes and wants to support the Foundation.

At the BENefit, Dr. Michael Jensen announced that his work on relapsed leukemia has been given approval by the FDA to move into clinical trials. That means that children here in Seattle who have no other hope than a miracle have a chance at that miracle; they can enter a clinical trial using their own re-engineered T-cells to fight their own cancer. It will begin sometime in the next few weeks.

This announcement brought our table to tears. We were sitting with my parents, brother and sister-in-law, as well as with two other couples who are friends – both of whom have watched their own daughters die from brain cancer. Three sets of bereaved parents heard the news together. It was a dramatic moment, and one that has truly changed my life.

I finally feel relief.

I feel relief, for the first time since Katie died.

Since Katie died, I have felt like the parent of a murdered child. I have felt that the murderer is “at large,” and beyond the capacity of “law-enforcement” to catch. It hurts. I feel it’s my duty as her mother to catch her killer and bring him to justice. I didn’t realize that so much of my work and energy has been directed to catching this killer – but it has.

After the BENefit, several family members and friends joined me for a tour of the Ben Towne Center for Childhood Cancer Research. At the end of the tour, I took Dr. Jensen aside and thanked him. I told him that for the first time since Katie’s passing, I feel as if I can relax. I know that the killer is now identified. We may not have him on death row yet, but his whereabouts are known, and he is in the crosshairs of the law. They are going to catch him, and stop him from killing other children (and adults). This is Dr. Jensen’s mission, and it is now beginning to be available to patients (not just lab mice).

On the tour, my dad asked Dr. Jensen two important questions (and I think I heard the answers correctly):

1)   How much does it cost annually to do what you are doing?

Answer: $1.5 million

2)   How much do you need annually to be able to conduct experiments on the cancers you want to cure next?

Answer: $15 million.

Friends, what is being spent on the next election makes this sum look positively PALTRY. This research has the potential to cure children AND adults. If you know anyone who can contribute to it, please invite them to contact me or the Ben Towne Center. I will be happy to effect an introduction.

What I want most to share with you is the fact that I feel a new freedom now. The baton is in Dr. Jensen’s hands (and those of his colleagues, some of whom were part of Katie’s care team). I will continue to do my best to raise awareness and financial support, but I can finally let go of this part of my work, because it is being done by the professionals. And some of the thanks for that goes to Carin and Jeff Towne, and the memory of their precious son, Ben.

I wasn’t aware that I was holding my breath for this to happen, but I have been…and I can rest now. Thank God that prayers are being answered! The timing was not sufficient to save Katie’s life, but I believe that the cure will be part of her legacy.

Thank you for reading my blogs, for commenting, for supporting our family through this time. Though we will never be “over it,” your listening, caring and praying has been part of our healing process. That process continues – and finding a cure for cancer is surely a part of it.

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Music

Detail of Glass Sculpture by Dale Chihuly, Benaroya Hall, Seattle

Music is surely a divine gift. The sounds of harmony, the variety of instruments, the styles and individuality of each composer, musician, origin and era are part of the richness and abundance of this gift. Nations have different indigenous sounds and styles; cultural stories and legends can be woven into and expressed by a nation’s music. We can learn a great deal about the heart and history of a people by listening to its music through the ages.

My brother attended a conservatory of music for three of his four years of college, so I have an appreciation of classical music and musicians; though I am still fairly ignorant about it, I enjoy music, and love to attend live performances. I spent many hours of my youth keeping Jim company as he practiced scales on the piano, or played classical guitar pieces over and over again as part of his study, so it is fun to re-visit that world.

Last night, Gregg and I had the privilege of attending the Seattle Symphony’s concert, conducted by a friend of our friend Linda. Linda travels all over the world singing operas, so she knows musicians and conductors everywhere. She let us know that her friend was here in Seattle, and helped to arrange tickets for us (if you follow the link above, you can listen to excerpts of each piece by clicking on the small speaker icon next to its name).

We were given fabulous seats – the closest we’ve ever been to the stage – and could see and enjoy the music visually, as well as listening to it. We could see the expressions on the faces of the musicians, see the eye contact between them and study the various instruments. I had no idea, for example, that cellos could look so individual – there were at times six or eight cellists on stage, and not one of those beautiful instruments looked alike. The form of the instrument was similar – they resemble a woman’s body – but the color and finish of the wood was unique. Red, blonde, brown – so many shades and grains of wood – made me wonder about the history of each instrument. How did that musician end up with that cello? Was the tone of the sound just right for his ear? How old was it the instrument? Who made it, and where?

There was a cello solo in the Tchaikovsky piece which was pure joy to hear. The cellist was filled with passion for his music – his face reflected such intense pleasure that at times, it was hard to look away to watch his fingering and bow – and his technical expertise was stunning. Being so close to the stage enabled us to really appreciate the effort he was making and the joy he was taking in it.

The conductor was simply riveting. I have watched a number of conductors, and usually don’t pay a lot of attention to them, but because this was a friend of a friend, I was studying this one. Mr. Sondergard is very handsome, and he is a delight to watch, because he is filled with the music he is conducting. He uses his entire body to signal what he wants from the orchestra, and beyond that, as I watched his face and gestures, I felt that I could see respect, anticipation, excitement, teamwork, and embodiment of the pieces we were hearing. He seemed to feel the music in his veins, to throb with it, and the joy he radiated was contagious.

The orchestra performed three pieces, and received a standing ovation for two of them. Both times, Mr. Sondergard shared the limelight, pointing out and asking for sections of the orchestra to rise and receive its acclaim. I have never seen that kind of selflessness, to that extent, on stage. It created a feeling of community within the auditorium.

As an added treat, Gregg and I went to dinner at one of our favorite restaurants in the city, Cafe Campagne. As we were eating, I told Gregg that times like this are a miracle to me: the fact that we have delicious food to eat, time to enjoy it and each other’s company, and the privilege of listening to beautiful music – it is pure gift.

I told him that it seems to me, after six years of intense emotional and physical suffering, that the absence of pain now is nearly the equivalent of pleasure. 

We took our time, savored each part of the meal, watched people come and go through the Pike Place Market neighborhood, and saw the afterglow of sunset behind the famous market sign as we strolled to Benaroya Hall. The hall has two of these magnificent sculptures by Dale Chihuly in the lobby – a feast for the eyes:

Glass sculpture by Dale Chihuly, staircase in lobby of Benaroya Hall

I find music to be an inspiration and a joy, an art form which can speak for us, to us and about us – in nearly every place and time throughout history. Music – a timeless gift of expression of the human and divine spirit – is part of abundant living.

Abundance, Not Perfection

The past week has been filled with joy, good news and answered prayer.

That’s a reason to stop and give thanks – to just STOP, right there, and give thanks to Love for these blessings.

My book reading at Eagle Harbor Book Company resulted in raised awareness and support for childhood cancer research. I have specific, personal evidence of that, and it is a rich blessing to me to know that the message which I feel called to share is being heard.

And – HEY! I must say – they sold out of “Because of Katie,” and had to order more. It out-sold J.K. Rowling’s new book – can I hear a “woot-woot!” just for that fact?

Karen and Dr. Michael Jensen discussing childhood cancer research at Eagle Harbor Book Co. (photo credit: http://www.eagleharborbooks.com)

After that, I spent days writing and working on other projects. On Friday, it was time for the third annual Ben Towne Foundation BENefit. Gregg and I have been fortunate to have attended this event every year, and to have seen this dream grow BIG. We love Carin, Jeff and Ryan Towne, and wish we had known Ben. We met the Townes because Ben was treated in the same place by the same staff who treated Katie, at Seattle Children’s Hospital. Fortunately, one of those people thought we should meet – and we did. The resulting friendship is indeed a gift from our children.

Gregg dislikes re-entering the world of pediatric cancer, and this is the only benefit which I can persuade him to attend nowadays. He goes gladly because he wholeheartedly supports what the Ben Towne Center for Childhood Cancer Research is doing, as well as the family and the Foundation that brought that center into being. I can’t think of ANYone who could persuade Gregg to be in a video other than the Townes.

benefit 2011 Feature Video from ben towne foundation on Vimeo.

It would be difficult to describe the relief – the weeping, grateful relief – which I felt on Friday evening when I heard  Dr. Jensen announce from the stage that the U.S. Food & Drug Administration has just approved clinical trials for the new T-cell therapy he has designed. That application, submitted by the Ben Towne Center for Childhood Cancer Research, is what I have been dreaming of for at least five years: therapy which does no harm, only good – and rapidly. Therapy which can help adults, as well as children. Therapy which can be applied to a variety of different cancers, without causing secondary cancer. It is therapy that I wish had been available in time to save my own daughter’s life, and the lives of our friends’ children.

In the midst of these blessings is the knowledge that none of it changes the outcome for us…Katie is dead, as is Ben, Hannah, Jenny, Henry, Jessica and Hayden, and so many others…they are not with their parents, where we feel they belong. They should be here, growing up, being loved and nurtured by their families. But they are not. They are somewhere else. In my belief, they are in the next phase of life, going forward, yet awaiting our arrival and reunion. I believe we will see one another again. I believe that Katie’s life work is large, full, and that she did it with beauty, dignity, courage and completeness, as far as her part goes. I only wish it had been a longer life, without the suffering brought on by cancer.

I will never feel that it was worth what has happened since – no matter how much good, no matter the progress and the lives yet to be saved – I will never feel that my daughter’s life should have ended at 12 and a half years. That will never, ever be “okay” with me. If someone wants to tell me that God had a plan and that Katie’s death was part of it, so that I would become more faithful, less selfish, an advocate for cancer research, or do any number of “good works,” I will want to punch that person on the nose. Period. So please, do not try to tell me that it was a “good” thing that this happened. It wasn’t, and it never will be.

Having written that, it is fascinating that in the class I’m taking right now – RIGHT NOW – the focus is on prayers that are not answered the way we wish they were. The lesson I’m studying (Beth Moore’s “Believing God”) is dealing with specific prayers for healing that are answered with recovery, and those that are answered without it – even prayers that are followed by death, rather than healing. I’m so glad that someone is willing to face the facts and discuss them! The worst thing is to brush off questions which don’t presently have answers. Wrestle if you wish, but do not deny or ignore!

Life can be filled with goodness, yet still be imperfect, and that is what my life is like. I have to work continually to accept what has been denied, and to embrace, with love and gratitude, what has been given.

A cure for cancer is closer – hope is rising – progress is in the works. My daughter, who should be applying to colleges this fall, does not live here on earth with her family; I can’t see her until I die. These are facts of my life. It is a life is filled with abundant blessings – and it contains horrific wounds. It is not perfect – it is human. And it is a gift.