life on purpose

All shall be well … (part 2)

You may have read my cross-post over at www.robmoll.com a few week’s ago. He is a friend and author who writes about death and dying and illness and how we apply our values to these experiences. As part of an ongoing dialogue on his blog, I wrote this piece. It relates to my ongoing journey through the world of breast cancer. It also relates to how we talk to one another about illness and dying. You might want to check out Rob’s blog for my original post and its comments to put this all in context:

In my experience, discussing one’s health or health care decisions can be highly sensitive, bringing to the surface many deep-seated emotions. Writing about my experience being diagnosed with a form of breast cancer gave me the opportunity to think and feel the emotions I have felt repeatedly for the last nine months. Writing online, however, also gave others the opportunity to react.

In many ways, this sort of interaction is familiar to me. My professional background is in adult protective services. I spent 15 years addressing the needs of older people who were being physically, sexually and verbally abused; neglected; and financially exploited by family members and others they trusted. As a direct consequence of their abuse and neglect and also because of their aging processes, many of my clients and their families found themselves in the midst of challenging medical and lifestyle decisions. It was my privilege to walk the journey of these decisions with many families. I have many observations from these years, but one of the most poignant is that family tension and conflict is magnified by the tough medical decisions that arise with illness and aging.

The same is true, it seems, among strangers who meet on the internet. I want to thank Priscilla, Enid and “Daughter of a Survivor” for their kind words and support in response to my post. I have found throughout my life that connections with others who share my experiences build community and offer opportunities for gathering information. They are valuable for those critical life moments of recognizing “I am not alone.” I wish to thank each of you for sharing your stories and connecting with me. That means a lot.

In the midst of the years of the Black Plague, the young Julian of Norwich was very sick. Given the illness and death around her, she presumed she was on her deathbed. And her response, now frequently quoted in many contexts, was “All shall be well; and all shall be well; and all manner of thing shall be well.” Julian lived for forty more years after this illness. Her words have been my mantra through many things in life, including this interesting journey through the world of breast cancer.

When I read one response to my post, by Cheryl, I was reminded of St. Julian’s words because they represent what Cheryl and I agree on: all shall be well. The comment concerned me on a number of levels, however. I’ve spent some time pondering whether to reply at all, but feel compelled to say a few things because this dialogue is important. I don’t want to leave this alone just because there is tension. So, a few thoughts:

The web is a funny place. There is anonymity behind the keyboard and the monitor. But nonetheless, I believe we are all responsible to be kind, or at least civil. As you can tell, “Jennifer” is a real person with a real history and real feelings. Saying that I was “off the beam” was not a very kind thing to say. If Cheryl simply meant that I was mistaken, I disagree, but nonetheless, there are a number of much kinder ways to say that.

Cheryl is correct, however, to say that DCIS doesn’t leave the breast. In fact, it doesn’t leave the milk ducts. That is what the “I” and the “S” mean – in situ. The cancerous cells remain in the same place. It’s not invasive. No one dies of DCIS. As Rob said, I’m not dying. Survival has never been part of the discussion regarding my treatment, and I don’t think I indicated that it was.

As a result, my consideration of treatment has always been about prevention. Each of the doctors with whom I consulted indicated that I am much more likely to be diagnosed with invasive breast cancer having had a DCIS diagnosis. So, the focus is risk reduction: how do I reduce the risk of an invasive cancer diagnosis down the road? While my immediate situation is not life-threatening, the route I take from here may have significant ramifications.

I am 42 years old. I have a lot of living yet to do. My children are young. I am otherwise healthy. While Cheryl is correct that many women who die of things other than breast cancer demonstrate DCIS upon autopsy, it is not common for 42 year old women to have DCIS diagnosed. In the breast cancer world, I am young. What has become clear to me after consults with a number of doctors and lots of reading is that no one really knows why some DCIS patients are subsequently diagnosed with invasive breast cancer and some aren’t. Does the DCIS “turn into” invasive breast cancer? Does the DCIS diagnosis indicate other risk factors that separately also cause the invasive breast cancer? Researchers are studying this, but right now – today – a DCIS diagnosis at age 42 is a red flag. It is a flare sent up to say, “Hey, you better keep an eye on this and maybe even do something about it.”

As a result of this and the changing medical landscape, I have options for treatment. In my previous post, I discussed how I came to choose the course I have taken. Cheryl’s treatment recommendation: “She should have it surgically removed, and tamoxifen is fine,” is one approach. It happens to be the approach that I am taking. But this particular area of breast cancer diagnosis and treatment is controversial and changing month by month. Fifteen to twenty years ago, women routinely had mastectomies for DCIS. Five to ten years ago, and even today, women routinely have lumpectomies, radiation for 6 weeks, and then 5 years of daily tamoxifen. But doctors are beginning to question whether this is the right approach for every patient.

I’m sure I haven’t read all the professional material out there, but it is clear to me that there is a lot of disagreement about how to approach DCIS. I seriously considered doing nothing other than coming in every 6 months for mammograms. Some doctors would recommend this, given the particulars of my diagnosis. On the other extreme, I seriously considered doing what is still considered “standard of care” for DCIS – excision, radiation + tamoxifen. After consulting with a number of doctors, I’ve decided on something between those extremes. This process of research and consideration took a long time. I had my routine mammogram in June and finally made a decision and will begin taking tamoxifen in April. Because I had the gift of time, I could research and consider carefully. This isn’t always an option for people, but because it was for me, my process may be clearer to me than it may be for some people who are making decisions more quickly.

This is my story. And like the stories of others, it is only a piece. Frankly, no matter how thorough we try to be, we only ever know a fraction of people’s lives. So I hope that when I hear someone’s story, I give her the benefit of the doubt and ask questions rather than make assumptions. In my work as a social worker, I’ve seen that done too many times. Understanding more of someone’s story helps us understand their feelings as well as the choices that they are making.

As you might imagine, there are many things informing my feelings and my choices right now. For example, my great-grandmother died of breast cancer at age 42. She left behind five young children. My grandmother was the oldest of the five. Her mother’s death had an enormous impact on her life. The direction her life took from that time on was directly impacted by her mother’s death. I have three young children. I am 42 in an age of mammograms; my great-grandmother was 42 in an age before mammograms. Her breast cancer was discovered, and she was dead three months later. This is not my story. But this story is very close to me and has impacted my life. I learned that I do not have the gene linked to breast cancer, but there is so much that medicine is still learning about the genetic nature of all cancers that my great-grandmother’s story and mine may indeed be intertwined. So, while I do not have the “breast cancer gene,” I still think about whether my great-grandmother’s cancer and other cancers in my family may relate to what is happening with my body right now. This impacts how I feel, and it impacts how I think and the decisions I make.

Though I am 42, I had not completely let go of the possibility of another child in our family. Taking tamoxifen and getting pregnant are not a good combination. So, my choice to take tamoxifen is a choice to be done with making babies. I am coming to terms with that. And all shall be well. But this issue impacts how I feel and how I think about this decision.

I nursed my three children for 9 years straight. Seriously. Nine years straight, through two pregnancies. Setting aside for the moment what you think of nursing toddlers and nursing through a pregnancy (I recognize people have lots of opinions about this topic!), I will tell you that I thought these nine years were my golden ticket. I thought breast cancer wasn’t even on the radar for me. Imagine my surprise when my biopsy came back cancerous. This investment was for my children, but the assumed golden ticket was an expected side benefit for sure. I needed to wrestle with how this impacted how I feel and how I think.

I hope that many others have the chance to be part of this dialogue about death and dying and illness and how our values inform our choices. While I am not dying, we all know this isn’t true. We’re all dying. We are human, and each one of us is living in a body that will one day give out on us. As we journey through our own lives and are also part of the stories of others who are dying, I pray that we have the time to carefully consider how our beliefs impact the decisions we make. It is so easy, in the pressure and haste of urgency, to allow our fears to guide us rather than our beliefs. I also pray that as we come to grips the fact that our journeys will end, we also show compassion to others who are learning to do the same.

Christ: Victor for All Creation

I originally contributed this to our church’s electronic newsletter. In case you’re interested, feel free to peruse the web site and visit the e-news archives: www.allsouls.com. The Cavalletti quote seems to be such an appropriate piece for the Easter Season that I wanted to share it with you. Enjoy!

Sofia Cavalletti is an Italian Roman Catholic who was an internationally known Hebrew and biblical scholar for many years before her friend, Montessori educator Gianna Gobbi, asked her to consult with her regarding the spiritual formation of children. Dr. Cavalletti reluctantly agreed, initially believing there was not much she could offer children, nor much they could offer her. She soon found that she was mistaken. Children were capable of doing theology. They were capable of knowing God, in fact, in a way she had never experienced with adults. This is the story of how The Catechesis of the Good Shepherd was born.

Dr. Cavalletti and Gianna Gobbi began by working with young children, aged 3-6, but soon began working with older children as well. The focus of the content for older children emerged: the history of salvation. What a task to undertake! In 1966, Dr. Cavalletti published her essential work on this topic: History’s Golden Thread: The History of Salvation, a short book offering the reader a guide to reading the biblical text in light of God’s redemptive work in human history. In 1999, Rebekah Rojcewicz translated the original Italian work into English, thus offering the text to hundreds of catechists in the English-speaking world who sought a “primary source for working with older children on the history of salvation” (History’s Golden Thread, p. viii).

As an adult who works with children, I will tell you that History’s Golden Thread contains a wealth of content that informs our Children’s Ministries at All Souls. And yet, there is so much depth to this work that, if you didn’t read the Translator’s Note at the beginning, you would have no idea the book was translated to support children’s catechists. Even Cavalletti’s introductions to the first and second editions read like introductions to any major theological commentary. This first week of the Easter season, I offer you a short piece from the book on the meaning of the Resurrection. I commend the book to you for further reading.

Image via Wikipedia

The paschal mystery of Jesus carries an inherent demand for universality and therefore for unification. Thus, it is not without reason that the sign through which they are realized is the cross. It stretches its arms outward, to the east and to the west; it stretches upward, toward heaven and is anchored in the earth. Saint Paul observes how “God was pleased to reconcile to himself all things, whether on earth or in heaven, by making peace through the blood of his cross.” (Colossians 1:20). Here Saint Paul presents the resurrection in its cosmic dimension: It is an event through which not only human beings are reconciled to God, but the entire universe is reconciled to the Father in Christ the man. Christ’s human body, which comes back to life, is mysteriously linked to all of nature; therefore, nature itself cannot avoid receiving from the resurrection a new, life-giving sap. We have already seen how at the birth of Jesus the natural elements were stirred by the presence of the child of Bethlehem. Now, at the resurrection, the fracture that Adam’s sin caused in humankind and between humankind and nature – which had been created for him and against which he rebelled – is healed. The original harmony is re-established in Christ in such a way that Saint John Chrysostom can say, “In him the heavens are risen, and the earth is risen; in him the world is risen” (PL 16:404).

The world would have remained fractured had the blood of Christ not erased the sin that caused a chasm at the center of the universe, between the higher and the lower creation, that is in humankind. Placed in this central position of the universe, Christ bore this rupture within himself during his earthly life, due to his existence in the flesh. Yet, with his death and resurrection, he himself abolished this conflict, and, in rising above all things, he himself reunited all things that were separated. All beings have in Christ their center of gravity and their point of convergence. “He who descended is the same one who ascended far above all the heavens, so that he might fill all things” (Ephesians 4:10).

All this has occurred in Christ as the firstfruit of the new creation. We live in the time of waiting for the firstfruit to bear its full fruit – when “God will be all in all” (I Corinthians 15:28).

Hallelujah! Christ is risen! The Lord is risen indeed! Hallelujah!

Jon Acuff Guest Post

Some time last year, a neighbor-friend who blogs (Shelly at mylifeonthewildside.blogspot.com) introduced me to Jon Acuff. Well, not in person, but she introduced me to his blog:

www.stuffchristianslike.net

Jon is an amusing guy. I’ve been reading his blog ever since. The thing I like best about him is that he has an unusual combination: he is deeply passionate about his faith and telling others about grace through Jesus AND he’s funny. Those things don’t always come in the same package.

Jon is especially funny if you’re someone who grew up in a church or go to church now. He does a great job of poking fun at himself and his upbringing and the amusing ways that we implement this very serious stuff we call faith.

A couple months ago, Jon arranged to do a little contest that I agreed to be part of. So, here’s the deal. If this is the first you’ve heard of this, go to www.stuffchristianslike.net for the instructions. If you already got here from there, you know what to do!

Thanks for stopping by. Feel free to peruse my back posts while you’re here.

The “Is that contestant on American Idol a Christian Scorecard”

1. During one of the interviews, they say, “American Idol is going to be an interesting season in my life” = + 1 point

To add up your score with over a 130 other ideas on this scorecard, visit www.stuffchristianslike.net.