writing about/with authenticity

It's the Tina's of this universe who honestly pull me out of things when I have difficulty. True human kindness, authentic and real, is a good medicine for all. Again, thank you for sharing. Much love and metta to you.

Becca, have you decided on a mastectomy or is it a decision you are weighing out? I had the mastectomy surgery - twice - and have been peacefully (mostly) living with that decision since 2004. Unfortunately, the April Madison plans were canceled and it will be sometime before I am back in the area. But I am only a phone call away. I would love to visit and field questions and just touch base with you sometime when you are feeling up to it. I had so many days and nights of "the list" you talked about today. Mine was called the "volleyball bouncing around in my brain". So many thoughts to sift through - life changing and not - all while you're not feeling good to begin with. Very wearying........ Hang in there, pottery friend. Thanks for being willing to share your authentic moments with us. Glenda

Hi, Becca, As always, thank you for sharing your journey. I have a feeling you may at some point want to disseminate this blog in a more formal way to people beyond your "immediate" circle -- what a blessing for others on this path! As a Buddhist/mindfulness practitioner, I identify with your process of taking a step back as you experience various sensations and emotions. I actually think that is at the heart of mindfulness and the way in which all of us can practice look at suffering in a different way as the Buddha taught. Totally authentic, I'd say. Much love, Margaret

Good phrase to remember. It seems like you are going through some changes......I have one used on me that I've used "i think I know how you feel." Because, really, do any of us know what someone else feels, even if we've been thru a similar situation?

I can only imagine the weight of having all these seemingly millions of things you have to deal with... like don't go to your dentist. Goodness. In addition to the emotional effects, just the "keeping track" part... Your sharing sure has helped me expand my understanding and empathy for what the "c" experience is for you and of course so many others. I'm humbled and thankful to be able to take this in, even though only by reading. Your posting is helping us too, Becca.

I'm so glad to read this, because it helps me understand in a much more visceral way, the daily challenges on the physical and mental levels (and always the spiritual level is implicated as well!). I so appreciate what you wrote about authenticity and your awareness that we shape the story as we go -- having an audience can change what we write. The nitty gritty details you write about today somehow do feel more "real," not sanitized, but of course who's to say what's real? It's what you are aware of experiencing within the last day/night. Thank you for showing up, for your intention to be honest, for sharing. Perhaps this will turn into a book down the road, perhaps not. My guess is the blog is serving many purposes (self-connection, connection with others, mutual learning, support). Maybe it might help to remember that it is in service to you, rather than the other way around? I want to acknowledge the physical pain and discomfort, and I'm also guessing the frustrations involved in not being able to do something as ordinary as go to the dentist, and all the time and spoons involved in getting you to the dentist, and also the gratitude for the consideration, awareness, and compassion of Tina. Being with all of that.

Hello Becca and Don, Thank you for allowing us to be a part of your incredible. journey. My thoughts and prayers are with you. Sincerely, Sue L SL

Becca -- I've been thinking of you every day since I received your email a couple of weeks ago, one that had originated in a CORE-related concern, in which you were also kind enough to share your ongoing personal journey with me. I have something I've been meaning to share with some urgency, this link to the UW-Madison's Center for Patient Partnership program. This organization was founded by my dear friend Meg Gaines 20 years ago in the wake of her own struggles with cancer. Meg's doctors had told her to simply stop doing everything, because she had only months to live, and they "reassured" her that their prognosis was certain beyond doubt. They were wrong. Meg sought out alternative treatments and opinions, found one that worked in San Franciso, and her cancer has been in complete remission since then. Had she listened to her own doctors here in Madison without questioning them, Meg's partner Margaret would have lost her spouse, and her two children (one of whom had a relationship that was not legally recognized at the time) would have lost their mom. Thank goodness she did what she did, and then proceeded to help others find their way as well. Meg's Patient Partnerships organization has since served hundreds of people facing similar challenges. It's a joint project of the UW Medical School and the UW Law School (where Meg is on the faculty), which gives it an interdisciplinary cache that is rare. It's staffed by law students trained as advocates and instilled with special sensitivity to the needs of people seeking life-threatening illnesses in an often hostile institutional environment. You've written some powerful stuff about the wealth of resources available to you, relative to people you know with less race-based or socioeconomic privilege. I don't mean to be Pollyannish about this, but it's exactly well-connected folks like you who I believe benefit the most from a program like Meg's. In circumstances familiar to you and Don because I shared them with you at King Day celebrations back in January, I had been dealing with the potential loss of my home as the year began. I was fighting institutions like Wells Fargo, as well as with a federally-funded financial counseling service that refused to acknowledge that its mortgage mediation programming people had badly misadvised me. I've been a lifelong advocate in multiple roles over the years, and have helped hundreds of people who needed the assistance of someone who knew the systems involved, not just how they work on paper, but how they work in practice. And yet, I almost lost my own home, and then saved it, because I took the "risks" involved with asking for help myself. My team included a savvy, socially-conscious real estate agent referred to me by an accountant friend, and without Bill's navigation of the system, I could never have figured out a creative and workable way to keep my home. As I told you, the solution came when my cousins Tim and Martha purchased my condo back from me, and I now rent from them, in the opes that someday I'll be able to buy it back. As you'll see in a moment, this all relates in a way to your story.... So, for starters, please visit the webpage of Patient Partneships at http://www.patientpartnerships There's more to this story, but my laptop battery is dying, so I'll start with this, and send off more in a few moments... What you're writing about, and the way in which you're carrying your story out into the world have a beautiful and inspiring resonance with another significant person in my life, my cousin Nancy, who wrote about her own journey with cancer in the St. Petersburg Times, where she was a reporter. Thanks for the generosity of spirit behind this webpage, and know that you and Don are in my thoughts and prayers today and every day. Love, John

Part Two Again, it's so important to emphasize that those of us who have the most skills and resources to bear are often the most hesitant to reach out for the help of an skilled advocate who's one step removed. I don't mean to presume that you aren't doing all the right things, but do want to strongly urge you to check out the Center, because that's where the trained advocated at the Center for Patient Partnerships come in. See http://www.patientpartnerships.org/ Here's a summary of their mission and a history of the group that evokes this: http://www.patientpartnerships.org/about-us/our-history/ And here's an article published 10 years ago in the New York Times that tells the story of my friend Meg Gaines http://www.nytimes.com/2005/08/14/health/14patient.html?_r=0 And now here's the rest of the story: Eight years ago, Meg was a guest on my radio show. She was joined by then Atty Gen. Peg Lautenschlager, then coming out of her most recent round of chemo treatments for breast cancer, and Nancy Paradis, my first cousin (our mothers were sisters), and the consumer reporter for the St. Petersburg Times. Nancy had been diagnosed the year before with glioblastoma, the same brain cancer experienced by Ted Kennedy a short time later. Told that she had two months to live, like Meg, she sought out alternative treatments that extended her life for another 2 1/2 years. Her story, written by a colleague, is told here: http://www.tampabay.com/news/obituaries/times-journalist-sought-answers-and-action/507518 That radio show conversation with Meg and Peg and Nancy, which went on for 2 hours, was the most memorable and moving radio show I ever produced. I said little. The wisdom and shared life experience of these three women was extraordinary, and the conversation just flowed. Unfortunately, due to a technical problem, it's one of the few shows that I no longer have in my archives. But I'll never forget a moment of it. Like you, Nancy was determined to share her story with the people who she cared about. That included not only those of us lucky enough to be in her family, but hundreds of members of her faith community, and thousands of her readers. I don't mean to bring you down with her story, and we miss her greatly each and every day, but most relevant to you is the way that Nancy lived out her time in the face of her challenge with cancer. And, most relevant to you, is that Meg and Peg are now in complete remission from their own battles with cancer many years later. So check out Nancy's story. Check out Meg's website. Give Peg a call if you need moral support. Continue to seek out new paths on the road to recovery. Continue to reach out to supportive friends and family. I don't mean to be Pollyannish about this. It's a daunting challenge, with many possible outcomes. But my heart and soul tell me that, resonant with these three incredible woman, that you'll find a path through this, my friend. With much love and appreciation, John

Thanks, John. I appreciate your sharing your story and your insights. I've met Meg once and will consider reaching out to them -- I was under the impression that their services were for people with less access to resource than me, but will reconsider that. A note about the use of the phrase "I don' mean to be Pollyannish, but..." --- this is so common in our usage, and I believe is a deep disservice to the power of positive thinking, and a misconstrual of the original Pollyanna story. If you actually watch the Disney movie Pollyanna, you will find she was a true hero, who transformed the lives of many people around her by getting them to shift their negative attitudes. And (spoiler alert!) when she was severely injured and lost her own sense of hope, they all came to help and help her regain it.

Several quick comments: The story of Pollyanna was one of the first books I ever read as a kid, but I think I'd forgotten about that. In many ways, she was a role model and an inspiration for me. So my choice of words was unfortunate indeed. Secondly, there is no cost for the services at Patient Partnerships, and unless they've changed things, they don't have income guidelines. To be really clear about this: my cousin Nancy was heir to a $30 million inheritance, and earned a good income, and they definitely were willing to help her. (The only caveat is that I arranged this all through Meg, so i supposed they might have made an exception, but I don't think so, because everyone else I've referred there also was financially secure. Lastly, please do read Nancy's story, located off of the link above.. If I didn't say it before, the path you're taking very much reminds me of hers. And that is one of the best compliments one person could pay another person. We shared monthly conversations in those last several months, and she was as much or even more of help to me as I was to her. She taught me how to make it through a tough time like this one as much as anyone I know. Take good care, my friend. Please do contact Meg, and say hi for me. Her formal name is Martha E. Gaines and her contact info is below. [email protected] (608) 265-6267