How The Hubs Feels

The Hubs wrote this last night. I haven’t edited at all–this is purely his heart. I’d love it if you guys shared it around the interwebs.

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Saturday, February 21, 2015

Susan G. Komen
5005 LBJ Freeway
Suite 250
Dallas, TX 75244

To whom it may concern,

I am writing to you asking that you change your focus of your organization and reallocate a large portion of those funds from that refocus to an under resourced area of research. The current Komen mission is focused on education and funding research. I would argue that the first part of the mission has been accomplished and that you need to focus more on the funding research. Everyone is aware of breast cancer. From the NFL wearing pink, the various products that you can buy that have pink ribbons on them to the flowing masses of people that participate in the Walk for the Cure. People are aware of it. They are so aware of it that it threatens to lose meaning or importance of it. My observations of it has that it has become a marketing and revenue generation business, but it feels like it is a business that has lost track of its mission. The statistics I’ve been able to find show that somewhere between 15%-20% of the funds generated by the Susan G. Komen for the Cure charity are spent on research. Using your organizations own statements in the past of “83 cents of every dollar…” that means that about 63% of your funding dollars are spend supporting the other missions then research. Your organization has won the education war. In my 38 years on this earth, I’ve seen a steady increase in awareness as well as society being engaged on the issue of breast cancer. People can talk about it. People are aware of it. They know it is a problem and they know people impacted by it. The mission has been accomplished. It is time to flip the numbers around. According to your own numbers, you spent 38% of the 2013 funds on education, and only 18% on research.
I implore you to switch your mission priorities around. The primary mission should be funding research now and not education. Research funding has been being cut left and right at all levels in science, and while the amount of money that Komen is providing in grants has been up, the percentages are not, or at least not that I have been able to find reference material on. You should instead refocus much of those education dollars on research for stage IV and prevention of cancer progression from the various stages. That we need more then treatments and that while are quick to point out 5 year survival rate for early-stage breast cancer are excellent, but that is not enough. What of those with stage three and stage four? What of the why’s and how’s of the sometimes rapid progression from the various stages? That is the hard work. That is where lives are lost and families destroyed. That is where the need is greatest, where research dollars could have significant impact and spur research in those areas of the greatest impact. Think of what things would be like if Komen came out and said “we are going to spend 45% of the money brought in on research…” You would be effectively tripling the amount Komen spends on research. Not only that, because Komen is one of many and it is in a leadership position, it would send a clear signal of what the priority should be.
My wife has stage four breast cancer. She found a lump in March of 2014, and within a week our families life was upended as the diagnosis went from stage two, to stage three and after MRI’s, brain scans and PET imaging settled on stage four. Since then she has had two different rounds of chemo, a single mastectomy and is getting additional hormone and bone therapy. She recently had another PET scan that showed what is likely cancer in the marrow of her bone of her arm and on T11/12 of her vertebrae where there was none before. She is 38, a wife and mother of a seven year old boy and a three year old girl. She is quite possibly the strongest person I’ve known in my life and I have been there through all of this with her. We both know the statistics and the numbers about the cancer details and the impact that her young age has on the 5 year survivorship rates. The hardest thing on her hasn’t been surgery, the treatments, giving up working to focus on treatment or the doctor appointments. It hasn’t been losing her hair, the exhaustion or the side effects of the treatments. It has been the likelihood that she might never get to see our son graduate elementary school, or high school or college. What makes the tears flow is that she will likely never see our daughter start school. That statistically, she will miss all those moments of their lives and never know her children as adults. That her and I will not grow old together. And so you see, this letter is not the ramblings of someone who does not understand the situation, but one of someone who is all too aware of the realities of what stage four cancer means. That there is no cure and that the only way out of stage four cancer is feet first. That at some day, and I pray this day never comes, that my lovely wife will join the statistics for a final time of being one of the 40,000 women in the US who die from breast cancer every year.
So again, I implore you. Change your mission. Change your focus. Change the math and the equation. Spend more, not just a little bit more, but a lot more on research. Do the hard work and lead. Empower science and medicine to find a way. Celebrate the win of education, but fight the fight that is killing people every day. Fight the fight to give people more time and not just early stage, but late stage as well. So that even if my wife dies from breast cancer that maybe out there in the world there will be someone who benefited from the change of focus. That even if she dies, that maybe someone else who got a new experimental treatment derived from research will live, and that her family/friends/husband/children will be able to hold her close and experience all the things in life that they are supposed to together.

Sincerely,

James Hawkins Caldwell III

28 thoughts on “How The Hubs Feels

  1. I don’t know you or your family but I was stricken with a deep sadness and overwhelming fear that this could happen to me, my family, and that alone can bring someone to do something, anything to try and improve a situation for a stranger. What if I were to print your husband’s letter and send it to the Komen Foundation, like, once a week? Once a day? Or just send 100 a day, or everyone reading this could send a printed copy of the letter your husband wrote and then 1000’s could be received every day until they flip the script. I don’t know how to not support the “awareness” angle and support only the “research” component. I’m no rich millionaire, just a mom with a case of insomnia, trolling the Internet late at night. I pray the very best of life for you, your husband and 2 kids. You’re rich in love and support.

    1. I wish I could hug you right now. Am now perusing your blog, your words are so powerful and beautiful. XOXO

  2. Having lost my mom to the dreaded stage 4 breast cancer….yes, Yes, YES! My heart weeps for your family… Thank ‘hubs’ for his perfect words.

  3. Thank you for being a powerful, eloquent ally. I know your first and foremost concern and passion is the survival of your precious wife, as well it should be. But the rest of us with MBC also benefit, and I thank you for that. May they hear, may they listen. Ann Silberman of “Breast Cancer? But Doctor… I Hate Pink!” is running a petition to accomplish the same. She needs a minimum of 10,000 signatures to get SGK’s attention. We’re halfway there. Let’s share each other’s efforts, and continue to make noise for MBC awareness and research.

  4. Fight the good fight, run through the finish line. The power of love, which you obviously have a great deal of, can overcome so much. God Bless… I’m sharing.

  5. I am embarrassed to say that I had no idea so little they raise goes toward research. If you had asked me I would have said probably a lot more. What a great thing if it could be reviewed and reallocated now that we are all down with the pink. Thanks for sharing this. Thinking about you often and always look forward to reading your posts.
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    1. I think many people don’t know just how little they spend on research. Hopefully his words will bring awareness about this. (See what I did there?)

  6. I truly hope that his message is acknowledged by Komen. And it should be sent to other foundations also doing work in the cancer field. Share it with STAND UP TO CANCER and AMERICAN CANCER SOCIETY because they should hear this message as well.

    Blessings of hope to you and to your family.

  7. Someone has to say it. I feel for this man, his wife who is in a battle for her life and their children. Change your mission, refocus your considerable resources towards curing breast cancer.

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