Palliative Curriculum - Part 1 - Introduction

So it's good to see you again. Thank you. How have you been? It's been an interesting 10 months. Yeah. I think when we first met, I was just finishing the fourth cycle of chemotherapy for metastatic breast cancer. And in general, I came through that very well, worked every day, and kept my life as normal as possible. Wonderful. Because it could have gone a very different way. Right. And I was feeling good, and I agreed with doing radiation. And in fact, radiation was perfect to the extent, as you know, the node had been almost undetectable. It's still hard to find. And so in meeting with the doctor, in the meeting with the surgeon, she was very pleased. And she just asked me to have scans done to be sure nothing else was going on. Radiation concluded at the end of October, and I had scans. And shockingly, we found progression of the lymph node disease and found another small lesion on my left breast. And that's recent? That's just 1st of November. Well, there's a management challenge. Are you, other than a small thing that you can feel, are you in any discomfort in any way, physically? No. Just fine? Just fine. You're wonderful. The team and I met, my wonderful oncologist pulled together the oncology nurse and the social worker and a pain management specialist, nurse specialist. And we talked about what the next steps would be. And I agreed to a cycle, four cycles of CMF. And the idea is that after two cycles, if the axilla node did not grow, then that means I'm responding to CMF. And so things aren't going to be as catastrophic as they might be. And if I don't respond to CMF, then Dr. Von Rohen has another trick in her pocket. And so you're feeling well, and you've got a good medical game plan, and you've got layers of options. And how are you feeling? Is this causing you anxiety? Are you withdrawing? Are you feeling sad? Or how are you doing with this in your mind? There is sadness. There was really more shock because I had, I thought I had been fooling this disease all this time. Time to be like you did. And now I have to, I have to gain new energy to keep fooling it. And my, Dr. Von Rohen had suggested to both my husband and I that this was such a shock that perhaps we should now be talking to other people on the team. And that was very helpful. My husband is now seeing a psychologist that's connected to the palliative care team. And I've begun sessions with my rabbi. Mike has different issues than I do. So we're going down two different paths, but we come together and we share what's going on. Now, how are you feeling in terms of support and closeness? I think 10 months ago I told you that my husband was my hero. And he is the support of, I mean I couldn't ask for a better person to support me. But my children do live within, you know, one within walking distance and one within a half an hour. And we're together quite a lot and they're very supportive. Although they're reacting to this each individually differently. Are you beginning to make plans when your daughter might be able to come back and visit? Well, what I'm waiting for is the end of the second cycle of CMS. And if I'm doing good, then I'm not going to panic. And really I've been reluctant to ask Dr. Von Rohen the question of prognosis. I want to wait until the end of the second cycle to ask that question. That's a big question. It sits right about here. I can definitely see that. So at this point then, you're looking at a different set of needs for your medical care as well. Have you been planning for how you're going to cope with that in terms of this costs some, the therapy costs some, it's not all covered. Have you worries about that in planning? That's not your greatest fear. Financial, financial worries are not there. And are there other things that you have in mind as a major purpose for whatever time that you're now sort of planning for that you've got underway? Are you working hard on things or how is the purpose going? I work full time and perhaps I need to work with my team, my boss, and figure out how to maybe reduce my time so that there's more time to spend with. And I think, I want to say it's my family, it's my friends, but it's more than that. But I don't quite know what that is. It feels as though if a person is going to die within a shorter period of time than she wishes, then maybe working hard might not be where it's at. Although what I do is so important to me. So I guess it might depend on my physical ability and the ability to do the things as they emerge that I feel that I want to do. How are we doing, your professional care team? Are we doing for you what you need us to do? Do you feel that we collectively, do we respect you as the whole person that you obviously are? Yeah, I think probably the single most important thing to me is that I remain a person, an identity, that I not be viewed as a cancer patient. I don't ever want to feel that way. And the team treats me as a whole person. And is very good at understanding that when I want information, I want it directly and I want it honestly. I invite that. When I don't want information, that's okay too. They really are very good, I think, at reading me. Sometimes as I leave Jamie's office, I would say. I was too chicken to talk about that. And she knew it, but I know she would have been ready. And it sounds to me as though she must have talked with you about your goals for care so that we've got the right combination of treating symptoms and trying to win over this disease still and mixing that in just the right way. Is that fair? Right. There is still that intertwining of we're not stopping cure because we don't know that that's the appropriate thing to do yet. We really want to see if this will work. And if it doesn't work, we'll try plan B and we'll try plan C. It is fatiguing. There is no doubt about it. And you're just confronted with decisions every day. And that is fatiguing. But it does sound, though, that Dr. Von Rauen, she's hoping for the best with you and working for the best and planning for the worst in just the right way. Right. And she talks in terms of changing goals, that every step of the last year with her has been about goals and where we are at this point. And I think that's been really helpful. I really want to tell you how much it's been a pleasure being able to be with you. Thank you so much. Thank you.