Sunday, December 09, 2012

Decisions, Decisions

Clearly, I am not a dedicated blogger. After sharing a string of posts on Kym's cancer journey, six weeks came and went without a peep from me or a peck on the keyboard for this blog. But those six weeks have been anything but mundane. Kym is recovering beautifully from her initial surgery and is feeling great. She continues to focus on the full-time job of deciding on and preparing for her treatment path.

Her path has not been straightforward. This is more because we are in the enviable position of having options -- something we know many who face a cancer diagnosis don't get to enjoy. The findings from Kym's pathology reports and the additional biomarker tests have been, for the most part, very encouraging. She has Stage IB ductal cell carcinoma, which means that the cancer, though locally invasive, has not spread beyond her breast tissue. Her sentinel node biopsy showed only microscopic cancer and is considered node negative for staging purposes.

Chemotherapy would be a standard option; a few oncologists would recommend watchful waiting at this point. Kym has been working with Donnie Yance, a master herbalist in Oregon (www.mederifoundation.org), to develop a botanically based protocol to optimize her health and create a cellular environment that is not receptive to tumor growth. After many discussions and consults, a great deal of personal research, and much prayer, she has decided to postpone chemotherapy.

Just a sample of the biomarker studies Kym obtained on her cancer profile

I've thought about what I would say in this post for quite a while and it's frankly gotten no easier with time. While I have some misgivings about Kym's decision, I am also completely supportive of her decision. There are a couple of reasons for why I feel as I do. The rationale for her decision is well reasoned, so I don't think Kym is just eschewing traditional medicine because she is being naive or ill-informed. On the contrary, she has maintained an openness to whatever options make the most sense for her. At the same time, Kym is not just accepting whatever the doctor says; she is the personification of an engaged patient. And she has long understood the benefits of complementary approaches to health through her 30-year experience as a cancer survivor and her training as a certified holistic nutrition consultant.

I've attended or have listened in on as many of Kym's consults as possible. She's received excellent if not sometimes conflicting advice. Donnie's knowledge of tumor markers, current research on treatment protocols, and the effects of botanicals on the human body is truly impressive. I cannot find fault in the level of scholarly research he has personally done to arrive at his recommendations. In all of this, I feel very much the novice and, like most people, have to rely on the recommendations of experts and trust that they are bringing unbiased perspective to the table.

Still, I know my own comfort zone. I trust allopathic medicine because it is what I know. I also know its limitations and that it is subject to its own biases. How many promising therapies have come and gone when the initial clinical evidence prompting FDA approval prove not as demonstrable in everyday clinical practice? And how many times have we later learned that commercial interests shaped the initial evidence?

So I remain uncertain of which path makes the most sense. If it were me, I would have gone the "traditional" route and subjected myself to a year of chemotherapy, with all of the attendant challenges. But it's not me. It's Kym. And that's the second reason I support her decision, because the decision is ultimately hers to make. In truth it's the only important reason for my support.

Kym has also decided to go ahead with a mastectomy on the currently unaffected side. She is among a growing number of women who are choosing this option of a prophylactic mastectomy -- removing the breast tissue before there is evidence of disease. Most oncologists will tell you that the evidence for such a decision is not clear. We've also seen them quickly agree that it is a reasonable choice for Kym because of the mantle radiation she received in the past, making her risks for another breast tumor in the future even higher. So just after Christmas, Kym will have her second surgery.

More Decisions

This whole experience has given us reason to pause and consider some broader issues of how we are living our lives and how much time we are carving out for work versus family. I have been on a fairly high-intensity career track for the last dozen years -- first at Pfizer, then in management consulting at BearingPoint and Deloitte. My four years at Deloitte have been fascinating and, for the most part, very enjoyable. But it is an intense and somewhat relentless place. Performance expectations are high, as are the rewards.

Back in September, the day after we learned about Kym's diagnosis, I was on a call with Jonathan Grau from the American Medical Informatics Association -- my professional association -- about an industry survey on health informatics we were jointly publishing. On the call, I shared my news and Jonathan shared his -- he was leaving AMIA. Minutes after the call, he texted me: You should seriously think about taking my job.

Then the day after that I got a call from a good friend with whom I had been considering partnering for many years. He indicated he was ready to take the plunge and have me join his small but growing band of folks. Within a couple of weeks, I was staring at two unsolicited job offers.

Three, really, as Deloitte leadership had made it clear that they would be willing to work with me on whatever arrangement made sense for me as Kym went through treatment: work from home, focus on business development or eminence -- whatever would work best. But Deloitte is investing heavily in informatics, having recently acquired Recombinant Data, and is building a formidable federal strategy practice. I know myself and the way the firm works; it would be extremely hard to keep myself from being pulled into the middle of these important endeavors.

In the end, the decision was pretty simple. I needed more balance and a more focused career for a season. Staying at Deloitte, I would be like a kid in a candy shop who's supposed to stay on a strict, low-carb diet; and my friend's offer was great, but it was also in the consulting realm, which wouldn't really change the dynamic of what I do for a living.

So on 12/12/12, I will start my first day as VP of Corporate Relations and Business Development at AMIA. AMIA has over 4,000 members, but only 15 (and as of next week, 16) staff members. It's a role I can get my head around and something I feel comfortable doing. No doubt, there will be pressures of a different kind in this role. The AMIA board has high expectations for the growth of the organization and rightly so. I personally believe that this is the time for the informatics profession to experience a real transformation.

Our need for good data, information flow and better clinical decision support is real and more critical than ever. That information needs to flow not just to researchers and clinicians, but to the people receiving treatment and to their loved ones and caregivers who are invested in their health. I feel that need on a very personal level every day.

7 comments:

  1. Oh, man, will I be right there with ya.

    And I totally get your range of thoughts, and conclusions, about Kym's choice of treatments. Hm, who was it who wrote "It's all about me, so it's mine"? Oh wait, that was you. :)

    Can't wait to see you again. I'll be at the policy meeting Weds. Thanks for posting.

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  2. Thanks, ePD! Thanks for blazing the trail. See you in DC!

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  3. Ross,
    The decisions you and John Halamka have both made inspire me as I reflect on the 22-year journey with this disease that wife Cathy and I have had. Strong families, strong souls, and a solid mind-body connection seem, to me, as important as the choice of a drug.

    And we AMIA members will benefit greatly from your presence. Best wishes from the Frisse family.

    Mark

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  4. Sherry Reynolds - @cascadiaDecember 11, 2012 7:14 PM

    Tonight a room full of seasoned professionals were touched by yet another tender heartfelt reading by Ross - Tic Toc..

    I know that as you build up the AMIA organization they too are blessed by your ability to bring the art as well as your technical brilliance and gift for being so authentically present into your work there as well.

    At multiple points in my career I left high pressure high tech positions in order to spend my time where I felt it was most needed. Although in my case that was on a political campaign and in another case doing advocacy (I don't have a family of my own to pour my passions into) those bifurcations in my path ended up being pivotal in coming to know people like you and Dave and the many people at ONC.

    As to alternative medicine - I actually was the project engineer for the largest naturopathic, Chinese medicine and school of acupuncture in the US and I always supplement my traditional care with alternative medicine (weekly acupuncture while in Seattle) it can be a powerful way to health.

    Thoughts, prayers and hugs for you and Kym and your extended families

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  5. Ross,

    I completely echo Sherry's comments. We were all mesmerized. It was clearly from the heart and inspiring. Again you have made an impact.

    On a more personal note, one of my dearest friends faced a similar decision 15 years ago. He had stage 4 lung cancer metastasized in multiple locations. After surgery and radiation he opted out of chemo. He decided that while it works well in some cases (cancers) it did not seem so proven in others. He embarked on a holistic approach eschewed by many 15 years ago. It worked. Total remission (if that is a proper term to those schooled in the field). He is a dear friend to this day and I would likely have given up on golf was he not here.

    My wife and I are praying for Kym and you.

    Feik

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  6. Ross,

    So many important decision you and Kym have faced together. The way that you two support and nurture each other is so inspiring. I"m excited about your your decision to join AMIA and will continue to keep you and Kym in the light.

    Lisa

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    1. Thanks, Lisa, John, Sherry and Mark! We deeply appreciate your continued love and support.

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