11-1-09 Update – The End of an Error

“For all its technological power,” writes Rachel Remen in Kitchen Table Wisdom, “medicine is not a technological enterprise. The practice of medicine is a special kind of love” (p. 164).

I believe that for the vast majority of those who work in the health care field, that’s probably true. I certainly believe that for those who have formed a part of my cancer treatment team, it’s true. They are absolutely committed to their profession. It’s an expression into the world of their most loving selves.

But as most of us know, there are many ways to express one’s love. Many shapes that love can take. And there are people who need the kind of love we have to offer—and others who need a different kind of love.

For my cancer team, I am one of the latter. They have not been able to figure out how to give me the kind of love I need, and I have not been able to help them understand what I need, though I have tried repeatedly.

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In early October, when I had my long talk with “Susan” the nurse, she asked me to consider having a mammogram on my left (healthy) breast. She said that since I have had mammograms in the past, she knows I’m not categorically opposed to them (true enough). And she said that having a mammogram on the healthy breast is a standard procedure before having a mastectomy, so that if there turns out to be a problem in the “healthy” breast, it can be addressed at the same time that the mastectomy is being performed. She said it was time for me to have a mammogram anyway, since it has been two years since my last one. So she wanted me to consider doing this. I was resistant at first, but ultimately I decided that she was right; I should probably have one.

Meanwhile, as I was reaching this decision, I had another meeting with Dr. H on October 19th. When I repeated to him—for the umpteenth time—that I would like to have an MRI post-chemo in order to see more objectively how we’ve done with chemo before we go to surgery, he said that this would be the surgeon’s call, not his.

(I found out later that apparently this is because the surgeon uses things like MRIs to determine how much surgery to do—which is of course not my intention in asking for an MRI at all. My question is not *what* we will do at surgery, but *when* it’s time to do it.)

Then Dr. H reversed himself. He said, “I’ll tell you what...I’ll just order this for you.” I felt a surge of relief. “Thank you,” I said. “I appreciate it.” I knew he was humoring me, giving me something that would provide psychological reassurance for me. But I was willing to take it.

Still, I wasn’t sure what good it was going to do me, as he has said before that he will not authorize any more chemo no matter what, because by visual evaluation alone he thinks I’m ready for surgery. But at least, I thought, I’d have something that could be compared objectively with my MRI before chemo. If I can see how the bright crescent of cancer in my breast has diminished, I’ll be reassured.

If it has not diminished, then I’ll have to insist that we ask the next question: Is more chemo needed to get a better response in the breast? I knew I’d have to fight to get him to take that question seriously…and I couldn’t figure out how I’d know if he had taken it seriously, since he’d already made his opinion known.

But…one hurdle at a time, right? Get the image first.

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On Friday, October 23rd, “Susan” the oncology nurse called me to say that the surgeon had not authorized the MRI, but she did in fact want me to have a mammogram. I was surprised to hear this, as I had thought that Dr. H said he’d authorize it. Susan related that the surgeon said it wouldn’t change what she’d do at the time of surgery, so there was no need for it. I repeated that I wanted something more objective than a visual exam of the exterior of my breast to determine whether or not we have achieved our goals with chemo—that the issue for me is not “what” but “when.”

Susan said that the “when” doesn’t matter, because Dr. H will not under any circumstances authorize more chemo for me. “After all,” she said, “he is the captain of this ship.”

I was stunned. I couldn’t believe that she had put me in such a one-down position with that analogy.

“But,” I responded, “the ‘ship’ is my body, my life, and my potential death.”

“I know,” is all she said, softly.

I finally told her to go back to the surgeon and tell her that I’ll trade. I get an MRI and ultrasound of the diseased breast, and she can have a mammogram of the healthy breast.

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After hanging up with Susan, I realized that I wanted to know whether Dr. H would consider implementing a treatment plan that was devised for me at M.D. Anderson, should I go there. It was after hours, by this time. So I called and left a message.

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The longer I thought about Susan’s “captain of the ship” comment, though, the angrier I got. I am not fond of such a hierarchical metaphor for this relationship that I have with my team, but if we’re going to use it, then *I* am the captain of this ship! Not Dr. H! Not any of my other care providers! Me!!!!

I would prefer a more collaborative model be used to describe our relationship…and the fact that the model that fell so easily from Susan’s lips was so hierarchical, with me, the patient, in the role of the passive ship being steered by the all-powerful captain—that told me worlds about how my team sees what is going on between us. It was not a comforting feeling. I seldom walk away from encounters with my team feeling empowered and positive about myself…and now I could clearly see why this was so.

I wrote to Susan and told her that she was wrong, that Dr. H was not the captain of this ship. While I disliked that metaphor, if we were going to use it, I said, then I am the captain. All of my health care providers, from my primary care provider right on up the line, are all my trusted advisors and my technical specialists…but they are not the captains of any ship of mine. They never have been before I got cancer, and they are not now, either.

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I spent the weekend composing a letter to Dr. H informing him that I don’t think the relationship between us is working for any of us. They are miserable and I am miserable. I outlined my key issues of desiring a more collaborative relationship but feeling that I am never a part of the team and its decisions. I cited Susan’s reference to him as “the captain of the ship” and explained how this attitude was the very antithesis of what I had been trying to achieve by trying to open up our lines of communication in the past many weeks.

In the end, I said, it has not been working. While I like you on a personal level, I said, I think that on a professional level we are a poor match. Both of us keep trying, but it’s not working well, and it needs to end. And I named another oncologist at the hospital with whom I’d like to explore transferring my care—we’ll call her Dr. C.

I contacted two of my patient advisors at the hospital and a number of friends and family, sharing a copy of the letter with them and asking for feedback. Most of the people who were not associated with the hospital thought it was a very good letter. Most of the people who were associated with the hospital thought it was worded rather strongly and ought to be toned down.

I got advice from the patient advisors at the hospital about how to go about asking for a new oncologist, too. I didn’t know who should do the asking, or how. One of them said that Susan would set up the initial appointment for me. Alternatively, I was told, I could call the scheduler for the new oncologist myself, and I was given her name and contact info.

I said I was going to send the letter on Monday the 26th…but I didn’t. I wanted to see how the imaging question was going to play itself out. Maybe they would listen to me, I hoped. Maybe they would even agree that depending on the imaging results, it might be worthwhile to consider whether we’ve done everything we need to do with chemo and whether we’re ready to go to surgery. Just being willing to *ask the question*—with no predetermined answers one way or the other. Maybe, I thought, there’s hope?

Because I didn’t really want to change oncologists. Because on a personal level, I really do like Dr. H. He’s the nicest guy you could want to meet. Warm and fuzzy. But professionally, I just don’t agree with his approach and his decisions about treatment. But maybe we can work it out? I hoped….

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On Monday, October 26th, I got a call from Susan telling me that the surgeon had agreed to our trade. I would get a screening mammogram (and she did use that term, because I noted it when she said it) and also an MRI and ultrasound.

She said that in response to my voice mail message of the previous Friday, no. Dr. H would not be likely to implement a treatment protocol designed by someone else, because treatment is a matter of his professional judgment. If I didn’t agree with the treatment I was receiving, she said, I am always free to seek treatment somewhere else. I simply replied that that was certainly one option among several.

She commented that while I could be very free with my compliments, I could also be very sharp with my criticisms. I said that I tried to be fair. When something is not right, I am not hesitant to speak up. However, when something is especially right, or when someone has gone out of their way to help, or when someone has won a point in a debate, I try to also recognize that as freely as I recognize the problems.

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On Wednesday the 28th, late in the afternoon, I was at work when I checked my home email and found a message from Susan. It was giving me all of the times for my various imagings, including, she specified, for a diagnostic rather than a screening mammogram.

Most women have no idea that such a thing as a diagnostic mammogram exists. What we are enjoined to get each year is a screening mammogram. The difference between them is that the diagnostic version is much more intense. It involves taking more pictures, compressing the breast even harder for each picture, and exposing the woman to more radiation. They are used after screening mammography has indicated a possible problem in the breast.

I was not prepared to accept “mammography on steroids,” so I wrote back to tell her so. I began by thanking her for setting up the appointments. However, I said, the mammography appointment was not right. I cited our conversation of October 8th, in which the context of her asking me to consider getting a mammogram was the screening mammograms that I had had in 2007. I pointed out that she had also said on Monday that the deal I had struck with the surgeon included a screening mammogram. I asked her to please change the diagnostic mammogram to a screening mammogram.

Before long, I got a call from her. She said she couldn’t change to a screening mammogram because it is the standard protocol of the Mammography Clinic to do only diagnostic mammograms on women who have had a diagnosis of breast cancer. I asked her who was in charge of the clinic—who I’d have to call to make arrangements for the kind of mammography that I was prepared to accept.

She said she didn’t know, but insisted that it wouldn’t make any difference, because this is their standard procedure for women who have had a breast cancer diagnosis. I asked her why, if she knew this was so, did she have a whole conversation with me off and on for a couple of weeks about mammography, basing the conversation on my history of having screening mammograms. Why, I asked her, had she said on Monday that she would schedule a screening mammogram for me if she knew that the Mammography Clinic would only do a diagnostic mammogram for me?

And then it happened.

“Because I’m stupid, OK?” she said heatedly. And she proceeded to tell me that I was making a mountain out of a molehill, that I do this all the time, that my entire treatment team is tired of it, that no one has had the guts to tell me this but now she is, that they are tired of my constant stream of emails, and that they are all tired of this. That Dr. H is a kind, sweet man and a wonderful doctor. He comes out of the treatment room with me every two weeks and says, “I think we’re getting closer. I think we’re getting closer.” But that the rest of them are very tired of the whole situation.

I let her rant on. She was lancing a boil that has needed lancing for some time, and it was good to have a chance to have it all out in the open at last.

When she finished I thanked her for her candor. I said that all of the frustration they have felt toward me has been mutual. I am tired of not feeling like a collaborator in my treatment, tired of having all treatment decisions—even the most trivial—made without my input, tired of having to fight to get them to listen to me and not dismiss me when I come to them with concerns and desires, tired of having to fight to have a voice in what happens to me. Tired, tired, tired. I don’t know how much longer I can keep on like this, I said. I feel the same way. I am just exhausted, and it needs to end.

We talked for an hour, while I shut down my computer, closed my office, and drove to a supper meeting with a friend. (Ah, cellular phones!) Many things were said.

I asked her to tell me honestly how they would feel if I simply asked for someone else to take over my care. Would they be relieved, I asked? She said no, that they would feel it was unfortunate.

At one point, about 40 minutes into the conversation, I said that this is one of the most important relationships I’m ever likely to have in my life, but it is not working well at all. I said that I don’t know if this relationship can be saved. I’ve tried everything I can think of to try to save it, and I still feel disempowered as a patient, relegated to a passive role unless I stand up and repeatedly demand to be heard. And I am so, so tired of having to make those kinds of demands. I want this kind of power to be offered to me freely by my treatment team.

She said that perhaps we all needed to sit down together with the patient advocate. (I was encouraged to hear her say this. Counseling, in which we could air our mutual frustrations and try to work things out.) Then she finished her thought: the purpose of sitting down with the counselor would be to work out a contract that would regulate my behaviors in the future.

I asked Susan if she didn’t think that maybe I had some issues I would also like to bring to the table about their behaviors.

Her response was that they are giving me the best treatment they know how to give. That they want nothing for me but the best.

I said, “I know, Susan, but sometimes we don’t agree about what that ‘best’ is.”

And she proceeded again to tell me that I am always making mountains out of molehills, etc. I pointed out to her that this attitude toward my concerns is, itself, an example of why this relationship isn’t working. She couldn’t see it. The entire problem, from her point of view, is me.

Twenty more minutes of conversation ensued. I told her that I know that “Betsy,” the other oncology nurse, doesn’t like me. She doesn’t make any kind of eye contact with me. She has quit calling me by my first name. Her body language is abrupt, curt and unfriendly. I said I am aware of how hard Dr. H has tried to respond to me – to learn how to “validate.” (Though this is still a work in progress for him.) But we are still at an impasse about treatment decisions that doesn’t seem to be bridgeable.

Then Susan said again that maybe we need to sit down and draw up a contract for my behavior.

“Susan!” I exploded. “Listen to yourself! I told you before that this proposed counseling session should be more mutual, that I have issues to bring to the table, too. But you haven’t heard me. You continue to identify me and only me as the problem, here, even though I told you twenty minutes ago that I would want to bring up my own issues.”

“I did not say that,” she responded.

“You did too!” I said, “at the point where I was turning off of Smith Level Road and onto the 15-501 South.”

This did not sit well with her. She said I was nit-picking her words, or something to that effect, and she said she was upsetting the patient. She said it again – that she can’t do this any more, that she’s upsetting the patient…and she hung up on me.

I went into the pizza place, sat down at the table with my friend, and cried.

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When I got home that night, I wrote two emails. One was an email to the entire team, thanking them for the care they have given me so far in this battle with cancer, and listing several things they have done that I have appreciated.

The other was an email just to Dr. H. It was not the one I had prepared over the previous weekend. I modified it quite a bit.

I began by thanking him and Susan and Betsy for their care. I said that people had asked me from the outset how I liked him, and I said that personally I like him quite a bit. In fact, I said, I’ve become rather fond of you.

But, I said, professionally I don’t think we’re a good match. I said that I would not go over (again) the ways in which I think our relationship could be improved. I would only say that I have been trying my best over the last many weeks to improve it. And, I said, I know that they feel, from their perspective, that they have been doing the same. The fact that we are at such an impasse after 12 weeks of working together, I suggested, does not bode well for our relationship for the next five years while I’m in the “surveillance” mode of my treatment. We are all miserable, I said, and I think this needs to end.

I apologized for having caused them more than normal stress when I was first diagnosed due to my huge post-traumatic stress reaction. (Of course, I don’t know how I could have not had it…it was kind of uncontrollable. But that’s another issue and I didn’t bring that up in my email to Dr. H.) I said that I apologized for the trouble I caused and that I regretted that it happened because I think it has colored our relationship since then in ways that have been unhealthy for us all.

I stated that I wanted a woman for my oncologist, and I specified that I would like to explore having my care transferred to Dr. C. I finished by saying how much I regret having to make this request, because I really do personally find him a very nice person. But professionally, I said, none of us are happy and we need to move on.

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I waited all day Thursday for some response to my “transfer of care” email, but I got none. Dr. H responded to my “thank you” email, which was sent shortly before. So I had to assume that he had received the “transfer of care” email, too. He usually forwards such posts to whichever nurse he wants to handle it, so when I hadn’t heard from anyone by the end of the day, I began to think that I was going to have to make contact with my proposed new oncologist myself. Using the information that had been given to me last weekend, I called her scheduling person and left a message.

Shortly thereafter, I received an email from Betsy, telling me that from now on she, not Susan, would be handling my scheduling for surgery, radiation therapy, and all follow-up visits with Dr. H in the future. They would find another nurse or nurse practitioner to help me with any side-effects I might experience from my surgery or radiation therapy. (In other words, she and Susan were refusing to deliver any patient care to me any more.)

I was confused. If my request to have my care transferred had been honored, there would be no follow-up visits with Dr. H. Was my transfer request being denied? Did Betsy just not know about my request yet?

So I called one of the patient advocates who had helped me know what to do to get a new oncologist. She had been copied on the email Betsy sent me, so I hoped she could help me understand what Betsy had said. Should I let Betsy handle this? Should I move forward on my own? I didn’t know what to do.

The advocate had to go and check with Betsy first, because she was also confused by the email. As it turns out, Betsy had no idea that I had asked for a transfer of care. She told the advocate to tell me that she would make the contact. So at that point, I stopped all of my efforts on my own behalf.

But I began to wonder if Dr. H had received my “transfer of care” email. I wrote to ask, and he said no, he had not. So on Thursday evening I re-sent it.

His response was that Dr. C would be a wonderful doctor for me, but he thought that we should still see one another for my final chemo, which will be on November 2nd. I said that I appreciated having his support, as I know that he wants what is best for me. And I said that I look forward to seeing him on Monday for my final infusion.

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I was gone all day Friday. When I got home, there was an email from Betsy, forwarding the patient advocate’s email from Thursday afternoon and reprimanding me for having not followed her (Betsy’s) instructions, delivered via the advocate’s email, about letting Betsy contact the next oncologist. She said that she thought it was inappropriate of me not to have let Dr. H know what I was planning to do, first. And she asked me to follow the instructions I have been given, in the future.

I wrote back to her to explain that I was in fact following instructions that I had received before I ever got her instructions, that I had in fact informed Dr. H a day in advance—and I outlined the sequence of events. I assured her that as soon as I had received her instructions, which superseded the earlier instructions, I had ceased all efforts on my own behalf.

This very exchange, however, I said, is another example of why this relationship is not working and why it needs to end. I said it is time for us all to have peace. No more tears. No more anger and frustration. Just peace.

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And in fact, there is a heaviness in my heart that has been lifted. There is sorrow. I am grieving over everything that has come to this pass. This is most definitely a failed relationship. A major failed relationship. How can I not be sad about it?

And I am concerned that, workplaces being what they are, “office gossip” will tag me as a problem and my entry into a relationship with a new care team will be difficult. I’m not sure how to handle that…and I’ll be seeking advice from my regular counselor and from the hospital’s psychiatrist on how best to do this. (I had forwarded the psychiatrist a copy of the “transfer of care” email, and he called me on Thursday morning to offer his support for my actions as timely and appropriate, as well as his willingness to help me negotiate my way through this. — Interesting that he seems to have gotten the email before Dr. H.)

But I am also at peace in ways that I have not been for weeks. I am not as afraid of what the future holds because my future is so tightly held in the hands of people whose bent is to seek to treat me…but not to collaborate with me and empower me as I become a cancer survivor.

I am hopeful that my future will hold a collaboration with a new oncologist with excellent listening skills, powerful explanatory abilities, and a commitment to creating empowered patients out of people who have just had one of the most frightening experiences of their lives—a diagnosis of cancer.

I am hopeful. And I am at peace.