All shall be well . . . (part 2)

You may have read my cross-post over at 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.

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