Kim
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Kim has had three episodes of breast cancer. After she was diagnosed with Stage 3B estrogen receptor positive breast cancer in her 50s, she “came home and wailed.” With her wife, in a state of shock, they promised each other “no false bravery.” She had a mastectomy, but she had “much bigger things to worry about than losing a breast.” Knowing chemotherapy was time-limited allowed her to endure the side effects After radiation, knowing she had a one in four chance of dying in five years was very stressful. EMDR (Eye Movement Desensitization and Reprocessing) reduced her anxiety immediately. But the Buddhist teachings of mindfulness really helped, long-term, to accept not knowing, suffering, and even death. It was helpful that she incorporated mindfulness training into her professional psychotherapy practice. Kim learned to hold the paradox: “this is terrible, and this is also opening my eyes to a life… I greatly appreciated already.” In the midst of suffering, Kim found herself “overflowing with blessings,” with nature all around her and the love and support of so many people.
Those first cancer episode learnings “paid off” six years later when Kim found a lump in her other breast. Kim “didn't react with fear or crying” upon learning that she had triple negative breast cancer, known as the most difficult type to treat. Instead of delving into research, she maintained her focus on the present. Fortunately, it was a very small and rare form of breast cancer and she was informed that it was extremely unlikely to recur. While she “did lose another breast,” Kim notes the diagnosis and treatment process discovered a totally unrelated tumor on her adrenal gland. It wasn't cancerous, but it could have led to a fatal heart attack. With irony, Kim acknowledges, “I could have been killed by that [“benign”] tumor,” and says that her second episode of “breast cancer may have saved my life.”
Life went on for some years until episode three. A CT scan to check out a chronic cough found that her lungs were clear, but breast cancer cells had spread to one of her ribs. A whole-body scan found no other tumors. Kim says she was lucky: “I'd always said if it comes back, I want it to be my bone... not an organ.” Treatment included a short but intensive radiation regimen and for a third time she is taking estrogen-lowering medication. Acknowledging the generally bleak prognosis for Stage 4 breast cancer, Kim emphasizes “there are outliers.” Right now, her cancer “seems to be on the slow track.” As a “really healthy” retiree, Kim is surrounded by love and grateful she can afford an upper-tier insurance plan that covers her monthly medications, knowing that too many people lack adequate health care.
Looking back over her experiences with breast cancer, Kim’s message to cancer centers and clinicians would be to help patients recognize they are “the same person who's now going through a radical experience.” She would ask providers and support group members to be open to conversations about death and dying—so often squelched in our “death-denying culture.” Kim, after much reflection on this issue, says, “after death… love seems to be just the most abiding thing… Knowing you've been loved that way. It's powerful.”
For Kim, returning to work meant dealing with how she felt chemotherapy had affected her memory.
For Kim, returning to work meant dealing with how she felt chemotherapy had affected her memory.
After I went back to work, I still had the fatigue.
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It gradually got better, but it made returning to work difficult. I couldn’t remember, as a psychotherapist, I couldn't remember information that well, people's details of people's stories that I might have been able to remember before. So, I relied a lot on notes. People understood that, my need to take notes.
Kim struggled with both physical fatigue and her own form of “chemo brain.”
Kim struggled with both physical fatigue and her own form of “chemo brain.”
When I look back on chemo, that's what I think. I was tired. I could feel it was a chemical tired. It's a tired that no one can understand if they haven't been through chemo. The kind of tired it is, it's like every cell was, for me, zapped of energy.
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It's kind of hard to pull apart chemo brain and fatigue too, because fatigue will cause some of the same kind of symptoms. But I know there's more than just fatigue going on.
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My short-term memory was shot. I was reading the New York Times every day. I had plenty of time for it. But I couldn't remember a whole lot of any. I couldn't remember much about what I read, but I enjoyed it. I remembered a few things, but I just couldn't-I couldn’t remember much of anything. My judgment, I think that maybe because my brain was so tired. I concerned my partner a bit because my judgment wasn't always so good.
Kim describes what it's like when care–including follow up–isn't well coordinated.
Kim describes what it's like when care–including follow up–isn't well coordinated.
But what was really lacking was there's the coordination of care. You know, the surgeon talks to you about this, and then you go to the oncologist who talks to you about this piece, and the radiologist talks about this piece. But there's, for example, the surgeon, I guess is the one who was supposed to talk with me about scar tissue. Well, you get released from the surgeon a month after surgery. And I think they gave me a handout about scar tissue, and I had to do some exercises. But it would have been better if somebody was following up with me and giving me some more specific information because I think I probably could have had less scar tissue. But that's not the oncologist's job, even though I have a fantastic oncologist. I love her, but that's not her job. And so, there's this kind of lack of continuity there. But I would say yeah, emotionally, there's nothing there to support you. I mean, I think, yeah, there's nothing there to support you.
Mindfulness helped Kim stay focused on her blessing through three episodes of breast cancer.
Mindfulness helped Kim stay focused on her blessing through three episodes of breast cancer.
It kind of set me on a path where I ended up already kind of interested in mindfulness, but I think realizing, I needed that if I was going to survive this emotionally. I had to be able to find that kind of balance inside where I could—in the moment, I wanted to be honest with myself, and acknowledge what was going on, and the risks that I had. I didn't want to get into any kind of denial about it or just assume everything was going to be okay when I didn't know, but I also wanted to be aware. I could just shift my attention for a moment and just see, also, right now. There are other gifts, you know, in my life. There are other parts of my life that are really extraordinary. So, that being able to do that and cultivating that. I mean, I worked, I cultivated really for years after that, but I really cultivated being able to hold both of those two things.
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Acceptance is a huge part of this whole experience because there's losses along the way, loss of—change in health status, loss of health, loss of a breast, loss of, you know, energy, loss of, you know, with the chemo, loss of hair, loss of—so many losses. And I found mindfulness practice helped me with this because a part of it, is learning about acceptance, learning to accept the things we cannot change, and acceptance is what brings us peace. So, this was a hard, and a big practice of mine throughout the whole process and in my life since because it's just helpful in life is to learn how do I accept this. And it's not easy, but it is where the peace comes in.
Kim had to change the way she worked because of memory problems.
Kim had to change the way she worked because of memory problems.
As a psychotherapist, I couldn't remember information that well, people's details of people's stories that I might have been able to remember before. So, I relied a lot on notes, and people understood that my need to take notes. And then I also kind of shifted some of my therapy techniques where remembering details weren't as important.
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But it was a challenge, and I did feel panicky going back to work at first. I was-, I felt somewhat discouraged. I wondered at times if I was going to be able to continue in my profession because I certainly had a standard for myself at- in terms of my functioning. But I was gradually—some of it-, some of the chemo effects did subside a bit in the fatigue, and I developed these other ways of practicing. What also is critical for me is I didn't start back full time again. I couldn't have done that. I started back slowly with a few clients. And again, I was fortunate I was able to do this. And just so we added in clients as I could kind of handle that.
Kim finds a way to make peace with the possibility of dying from breast cancer.
Kim finds a way to make peace with the possibility of dying from breast cancer.
When I came home, and I was howling after my diagnosis, I was afraid of dying. I was kind of obsessed with, “oh my god, am I going to die?” I had a lot of anxiety suddenly, “Am I going to be one of those one out of four people who dies in the first five years?” And so, I wrestled with that for a couple of years. And I decided I'm not going to look away from that question. I'm not going to just assume the best, because I knew that I had a 1 in 4 chance. I can assume the best. Why not? But still, I knew it was going to be there, that anxiety. So, I thought, I just got to deal with it square on until I find some peace with this possibility.
Kim was troubled that her support group avoided talking about death and dying.
Kim was troubled that her support group avoided talking about death and dying.
I'm ever grateful to my group. But when I joined this group about a year and a half into my cancer diagnosis, I was looking forward to a place to talk about a lot of these fears and anxieties and fear of dying and wondering how other people cope with that. I've brought that up in the first group, and it was very clear people did not want to talk about that.
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Even as people were getting sicker and sicker, we'd ask about their health status. But nobody, one woman, actually, there was one woman, the first woman to die talked about her likely death the most. But no one wanted to go there. And another woman, as I'm remembering the second woman to die, I remember her bringing it up with actually the leader of our group when we were just, the three of us were somewhere in the kitchen preparing some food. And the leader didn't want to talk about it. And I felt badly for her, because I felt like as a group, we were not able to support her. And I should have been braver or something now that I, thinking back, and should have said to the group, look, we got to, well, I don't know that you could do that, though, because people aren't ready unless they're ready.
Kim drew on Buddhist practice to overcome her fear of death.
Kim drew on Buddhist practice to overcome her fear of death.
I was howling after my diagnosis. I was afraid of dying.
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But the Buddhism helped because there's kind of this process and something called Tonglen, which is a practice, in which you if you're struggling with something, in this case, it would be fear of death. You think about all the people, maybe your community, that have that same fear. Or no, in this case, breast cancer, fear of dying from breast cancer. Just, I thought that. Then you think of everybody in your state who may have that fear, then everybody in your country, and then everybody in the world. How many people might that be? It's a lot. And then you think of everybody throughout all of history from the beginning of time, and you realize, "Oh my gosh, this happens all the time." This is not such an individual—I mean, it's a big deal, yes, but it's not unique. At any rate, I just had to work, and work at, "Hey, people die all the time of. Everyone will die, and this is not such a unique experience."
Kim was troubled that her support group avoided talking about death and dying.
Kim was troubled that her support group avoided talking about death and dying.
I'm ever grateful to my group. But when I joined this group about a year and a half into my cancer diagnosis, I was looking forward to a place to talk about a lot of these fears and anxieties and fear of dying and wondering how other people cope with that. I've brought that up in the first group, and it was very clear people did not want to talk about that.
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Even as people were getting sicker and sicker, we'd ask about their health status. But nobody—one woman—actually the first woman to die talked about her likely death, the most. But no one wanted to go there. And another woman, I'm remembering the second woman to die; I remember her bringing it up with actually the leader of our group when we were just—the three of us were somewhere in the kitchen preparing some food, and the leader didn't want to talk about it. And I felt badly for her because I felt like, as a group, we were not able to support her. And I should have been braver or something now that I-, thinking back, and should have said to the group, "Look, we got to-," well, I don't know that you could do that, though, because people aren't ready unless they're ready.
Kim found it helpful to read others’ stories about cancer.
Kim found it helpful to read others’ stories about cancer.
Actually, another thing that helped me a lot was I went online, and I read a blog. Actually, it was a blog of a man who had cancer. I can't even remember what kind of cancer, but he was just writing a very articulate blog about his daily experiences and emotions. I found that really helpful. It was just kind of honest and upfront. I read some books by people - actually a woman who was dead that had written about her cancer experience. I found that helpful. I don't think all books would be helpful to all people. I think it's finding what's right for you.
Kim says she was helped by friends with whom she could talk about dying.
Kim says she was helped by friends with whom she could talk about dying.
What was most helpful for me was a group of friends. I had--my closest friends--you know, so it turned out to be who understood I needed to talk about dying, who understood I need to talk about my fears. And they did not try to give me false reassurances, never ever, ever, you know? I mean, they might--one of them, whose partner actually had cancer, would say sometimes she'd just listen, you know, and shake her head. And sometimes she'd say, “Well, and you never know.” And I'd say, “Right, you don't know one way or the other, you know?” That's the unnerving part of this. But they were really able to just listen and not have to make it better for me.