10-16-2010 Update – Jody, Expletives, and Arm Pain

This has not been a good week. Jody, a young woman who finished her radiation treatments just two weeks after me, died on Monday. She was 33 years old.

I got to know Jody in the rads waiting room last spring. She was on Lineac 2, I was on Lineac 1, and we got our treatments at about the same time of day, so our paths crossed. Jody worked at the cancer center as a bench scientist helping unravel the mysteries of the BRCA genes that increase a woman’s risk for breast cancer. Ironically enough, when she was diagnosed with breast cancer, she discovered that she has the gene. Had the gene. (Getting used to the past tense is hard.)

After we finished our treatments, we got together for supper one evening in early summer. We had so much fun talking and sharing that we decided to do it again. Jody invited some of her other breast cancer survivor friends to join us the next time, and so did I. Thus has grown our nascent little peer support group, the Breast Cancer Sisters Local #1.

At the end of September, just six months after we had finished our treatments, Jody’s tumor markers shot up and she began developing shortness of breath. At first they thought it was pulmonary embolisms, which indicated that the cancer had returned. Cancer elsewhere in the body will often cause changes in the blood chemistry to produce embolisms. PEs can be a sign that there is cancer. And indeed it had returned. To her liver and her spine.

But her breathing just got worse and worse over the next three weeks, and she was in and out of the hospital several times. I sat with her one time so her worried student-husband would feel free to attend his classes at NC State instead of staying glued to her side. The last time she entered the hospital it was through the ER, and I visited her there on the Thursday before she died. She had graduated from a canula for oxygen to a full face oxygen mask with about a 50% concentration of oxygen being fed to her. When they couldn’t get her oxygen saturation high enough, they put her on 100% oxygen. And still it was not enough. Then they began to talk about intubating and ventilating her.

It was only then, nearly three weeks after she had first become short of breath, that they figured out she had cancer in her lungs, too. But not in the form of a lumpy tumor. It was in the form of sheets of tumor that were spreading throughout the lymphatic system of the lungs, blocking off and killing the tiny capillaries that make breathing possible. Sounds like the lung version of IBC. Like IBC, it is very rare.

She knew what was happening to her, more or less. She knew she was dying. Or did she? In one of her last posts to a message board, she described herself as “absolutely terrified” at the thought of being intubated and put on a ventilator as her lung function continued to decline. She also wrote that there was a long and scary path ahead…but it wasn’t long and scary. It was short and scary.

A physician on the message board responded to Jody’s post, expressing the hope that her doctors had given her morphine and an anti-anxiety medication, because they would help her with air hunger—that gasping inability to fill your lungs with air, and the consequent feeling that you are suffocating. I know this is the typical approach to dealing with air hunger, but I don’t find it comforting at all! I’m not sure that Jody did, either.

They intubated Jody on Monday morning and ceased treatment on Monday afternoon when her blood pressure began to fall and they couldn’t keep it up. She died at about 3:30 that day.

What would it be like to know you are voluntarily relinquishing consciousness so they can intubate you…and that you may never regain consciousness again? How do you do that?

A mutual friend assures me that Jody knew she was dying and had a couple of days to say good-bye to her family, who were gathering at the hospital. How do you lie there in a hospital bed, struggling for air, and say goodbye to your family at the age of only 33? Who, at age 33, has planned for such a thing to happen to them? Who is prepared to do something like that?

Jody lived, and died, one of my worst nightmares. And she did it far, far, too soon. I am so, so sorry that this happened to her. And I am so, so sorry that she is gone. It breaks my heart.

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On the Wednesday after Jody died, I saw that some medical journal had published an article about depression in cancer patients, and a doctor from my hospital was quoted in the article. So I checked it out. The tenor of the piece was that maybe cancer patients who receive a terminal diagnosis could be depressed and ought to be evaluated for that and then maybe medicated.

Gee, d’ya think maybe they might be depressed?!!! What ever gave you THAT idea, Einstein?!!!!

But the part that got to me was the opinion, strong throughout the article, that terminal patients who are given just a few weeks or months to live might be depressed and ought to be medicated, if necessary, to try to prevent their committing suicide. This just abso-friggin’-lutely enraged me beyond belief.

They shouldn’t have the right to take their own lives, if they choose to do so? Instead, we should let the cancer do that for them? Of course, the article suggests, we should be doing whatever we could to alleviate or at least minimize their suffering, but if we can’t alleviate it…well…. The important thing in the end is that they did not commit suicide.

This infuriated me beyond words. I mean, I believe that all cancer patients and especially terminal cancer patients should absolutely be offered psychological care, necessary drugs for depression or anxiety, aggressive treatment aiming for cure if they want this, palliative care or hospice care (a rose by any other name…).

But I also believe that in the end, if they have been handed a diagnosis and told that they have only a few weeks or months to live and they choose to take their own lives rather than let the cancer cannibalize them, this is a legitimate choice. It’s a sad one. But a legitimate one.

A friend of mine in Pennsylvania plans to do this and has the materials on hand to do so. Right now she’s living wild and free and loving life. She’s on disability and is pulling in more money now than when she was working full time. She travels all the time. And she just had her first grandchild. She’s mostly pain-free. She’s nowhere near the place where she’s in so much pain and so near death, anyway, that it’s just time to go. But when that time comes, she has assured me, she will end it her way and not let the cancer do it for her. Not let the cancer have the final word. And I totally support her in doing that, when the time comes.

The article just infuriated me. It seemed so condescending. All these talking heads, these “professionals” who have never been told that they are dying—and soon—speaking with great authority about what “ought” to happen so that no one rushes Mother Nature by taking their own life a few days or weeks before Nature can do it, herself.

I forwarded the article to Dr. D, the oncology psychiatrist whom I have seen several times over the course of the last year, since one of his colleagues at the hospital had been quoted in it, and I expressed my disagreement in strong and frank terms. I cursed floridly in the post.

Dr. D had not responded to me a couple of weeks earlier when I had asked for a prescription for Ativan to help with the shortness of breath I’d been feeling. I had assumed it was due to the rapidly deteriorating situation with Jody and the serious, mysterious health situation of another young member of the Breast Cancer Sisters Local #1. I knew that my own shortness of breath, which was not being relieved with my inhaler, was probably not reactive airways but a low-grade anxiety caused by ongoing concern for my friends. It was psychological, and I thought I needed some help in managing this anxiety since the power of positive thinking, alone, wasn’t working very well. So I decided I needed some medication.

My asking him for this drug was a kind of minor big deal, to me, because he’s offered me anti-depressants and anti-anxiety meds in the past, and I have always turned him down. But now I had finally decided to trust him by asking him, a psychiatrist, for medication, rather than my primary care provider. It was my way of saying, “I trust you enough to allow myself to become vulnerable to you, by accepting the psychoactive medications you can offer me.”

I have no problem being vulnerable like that with my PCP and accepting psychoactive drugs from her, when I feel they’re warranted. I have been very hesitant to allow myself to be vulnerable like that with him, because he’s a psychiatrist and it seems that he’s always ready to whip out his prescription pad and medicate my legitimate feelings away. I’ve held him at arm’s length, in this regard. Unwilling to allow him to do that. Accepting his help in talking through issues surrounding my care at the hospital, but refusing to allow him to dismiss the legitimacy of my issues by trying to medicate them out of me—to make me into a Stepford Patient.

But it’s not really the drugs that are at issue. It’s just that I didn’t want him to see me that way—or more appropriately put, to interact with me in that way. I wanted him to interact with me as a person, not as a diagnosis that he could write a prescription for. So before this, I had always refused to allow our relationship to be based on that. I had insisted it be based on dialog, not drugs.

In almost two weeks time, though, he didn’t respond to my request. I figured he was out of town again and not checking email. He travels a lot. He can be hard to reach. I wasn’t too concerned. But when Jody died on Monday afternoon, I knew I needed help and couldn’t wait any longer. So I called my PCP on Tuesday morning and within a couple of hours I had my Ativan.

Then on Wednesday I read that jack-ass article and forwarded a copy to him, complete with my expletive-filled commentary. Within minutes he had emailed me back, asking me to call him and if I didn’t reach him, to leave a number where he could call me. So I did. I emailed him and I left a voice mail for him. I reassured him that I was not, myself, suicidal. That all of my anger was directed outward, so not to worry.

He called me a few hours later. I said, again, that I was not suicidal, so he has nothing to worry about. He said he wasn’t concerned about that, but he had noticed that my request for Ativan hadn’t been answered. It had kind of fallen through the cracks and he was sorry about that and would I like something now? I told him that my PCP had already written me a script for it and that his doing so was now unnecessary, but thanks anyway.

Then he said that he was mainly calling because he was concerned about the email he had received from me. He noticed that it had some strong language in it, and he noted that I have always had strong emotions and he wondered if he might have missed a diagnosis. Could I be manic?

I couldn’t believe my ears. He was worried that he had missed a diagnosis. That’s why he was calling me. And what’s worse, his first reaction was “diagnosis” (maybe she’s manic) not “human being in distress” (maybe she’s really upset).

I reassured him that no, I can cuss like a sailor. But I work as a writer (I’m not sure I said that, but I was thinking it) and I know a little bit about how to communicate. There are times when you can let it fly, and times when you’re better served to speak more conservatively. (Sometimes, I thought, with friends and when you feel secure with someone, you just let it fly. Apparently I was wrong to feel so comfortable with him.)

Jody had just died, I said, and she was only 33, and there is another friend who might have congestive heart failure because of breast cancer treatments and she’s only 40. And then there were all these jack-ass talking heads in that article talking about how cancer patients (especially terminal ones) should feel and should behave—and it just set me off.

I gave a micro-mini-rant about jack-ass talking head professionals who are safely spared a terminal diagnosis, themselves, but have all these grand ideas about how those who *are* given such diagnoses “ought” to feel and “ought” to act no matter how grim their prospects—and are willing to medicate them to get them to feel and act that way.

He said he was sorry about Jody. And he said he thought I’d made some good points in my email about end-of-life situations. I reassured him again that I was not manic…just depressed and angry and tired of talking-head bullshit. And the conversation ended.

It left me feeling angrier and sadder, though. He seemed to be more concerned about himself and whether he had missed a diagnosis than he was about me, a human being, and my grief and upset. Once he determined that he had not missed a diagnosis, it was like there wasn’t a lot more to say.

He didn’t miss a diagnosis. But he seems to have missed a human being.

In asking him for the prescription for Ativan, I felt I was inviting him to interfere in my life in a more personal way than I’d ever allowed before. I was saying that I trusted him not to lose sight of me as a person just because he was providing me with access to a drug.

But when it came down to it, he doesn’t see me—at least not primarily—as a person, but as a diagnosis that he either got right or missed. And he was relieved to think that he had not missed it. He saw me not as a person with a set of emotions that were understandably strong and might need processing, but as a person with a set of emotions that were pathologically strong and might need medicating.

Medication first. Humanity later. The exact reaction to me that I had trusted him NOT to have, at this point in our relationship.

Since that conversation, I’ve been trying to talk myself out of these feelings. I tell myself that maybe he feels badly that he didn’t catch my medical PTSD early on. In our first discussions he had asked me whether I had any abuse in my background. (Nope.) But it had never occurred to him back then that my very strong reactions to my cancer diagnosis and, especially, to my cancer treatments might have been fueled by a different kind of trauma. That what he was seeing might be old, unprocessed medical trauma. I don’t blame him for missing that. None of us caught it, really, for quite a while. The magnitude and significance of the medical trauma was a revelation that came only slowly and with time.

Maybe now, I keep telling myself, he feels bad about having missed the PTSD and maybe having missed opportunities to help with it more effectively. Flash forward to this last week or so, when he forgot about my request for Ativan for several days. Perhaps he was reminded of my request only when he saw my message about the jack-ass article, and my cursing (a new phenomenon, to him) made him think with some guilt about forgetting my request for medication. And then he thought back to the missed PTSD diagnosis, and wondered if he’d let another diagnosis slip through the cracks. And he called because he wanted to make sure he wasn’t repeatedly missing beats with me.

I tell myself that in asking about whether he might have missed a diagnosis, he was expressing his care and concern for me in the way he was trained to do. That this *was* him expressing care and concern about me, as a person. As a human being in distress. Not just as a diagnosis. And he had a way that he might be able to alleviate that distress (drugs, which require a diagnosis first), and he wanted to offer it to me, if it seemed that I needed it.

But then I tell myself that he could have ascertained whether I was manic by talking to me for a bit. He knows me well enough by now, I would think, that a bit of conversation would have revealed to him whether I was in a manic state or not. And in talking to me, he would have been showing care for me, not just for my diagnosis—finding out what is going on in my life, how I’m feeling. Instead, the way he went about it, it seemed like he was more concerned about himself and how he had done his job, than about me and how I was suffering and grieving.

Then I tell myself that yes, he could have talked more and not been as blunt about his concerns about my mental health. But we’ve developed a fairly frank relationship, over time (though clearly not one that has yet included my cussing as a normal behavior). So really, maybe he was treating me with some consideration in not pussy-footing around with me, as he might have with someone else, but instead just getting right to the point. Asking the question: Are you manic?

And besides, I tell myself, this was a phone call on the fly. I was in the car on the way to my exercise class. He was probably in between appointments of one sort or another. With me, the fact that he felt he could just cut to the chase and ask the question point blank is probably a sign of the respect he has for my intelligence and my self-awareness.

All of these “yes, buts” may be true. They probably are true.

But I just know that in the end, when the conversation was over, I felt that the big concern was whether he’d missed a diagnosis, not how much I was grieving and suffering. The contact he established when I sent him that article was not him rushing to offer his human support of another human being in obvious pain, but him rushing to offer his professional support via a prescription pad which, if it was not needed, left him with little else to offer. And that hurt.

I had thought I could trust him not to see me like that. That’s why I had asked him for the Ativan prescription. I had felt sure that in accepting this kind of help from him, at this point in our relationship, I would not be obscuring his ability to see me first rather than a diagnosis first. But I was wrong.

Sometimes, doctors and nurses, you may have professional acumen to offer a patient, but you shouldn’t always necessarily lead with that. Because when it gets right down to it, it’s often not the most important thing you have to offer.

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That’s been the story throughout this cancer journey. A feeling that most of my care providers are failing to connect with me as a person. Instead, they’re just trying to manage me as a patient with a given diagnosis.

I’ve been considering why it is that establishing a personal connection with my doctors and nurses has been so damned important to me. (There. I’ve cursed again. Maybe if I do this more often, in contexts where I don’t normally curse, psychiatrists will not be shocked and rush to judgment about my mental health status when I do it.)

I think I hunger for this personal connection—for the feeling that they are connecting with me as me, fully understanding and appreciating me, and not just connecting with me as an illness needing treatment—because this kind of connection is the only thing that has enough power to break down the walls of fear and mistrust. It’s the one sure way that I can begin to let go of my PTSD-generated anger and fear and mistrust, and move forward into treatment with a healthier frame of mind.

Yet I have seldom been able to find this. Most care providers cannot or will not cry with a patient, as Sunny the medical student cried with me that time. When it comes to that level of personal connection, most care providers cannot or will not do that.

From my point of view, though, her crying with me was one of the single most caring things that happened to me throughout my cancer treatments. The result? It made me think that if I had to voluntarily submit to intubation, I would let her do it. Because I knew, then, that she cared about me. And that’s who I want working on me. Someone who cares about me that deeply. Someone for whom I’m more than a diagnosis that can be treated with a prescription pad.

Maybe I’m just asking for too much? Maybe I should be satisfied to be a diagnosis and a prescription to all of them? Maybe I should be content to keep them at arm’s length forever, in return? To not let them get too near to me, to not trust them too much, and just use them to get whatever I need, without ever really seeking to engage with them as human beings, in return?

No matter how scared I am at the health situation I’m facing. No matter how much I need that human connection to feel safe or to feel confident about my treatment. Instead, just be content to keep them forever at arm’s length. Eyed warily. Approached cautiously. Not ever completely trusted.

This is the patient’s equivalent of the professional distancing that allows them to see me primarily as a diagnosis and a prescription. It isn’t a very satisfactory way of being a patient or (I would assume) of giving health care. But maybe it’s the only way that works?

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I am so tired. I am tired of my life being so intimately intertwined with cancer. I am tired of cancer, and I’m tired of myself and the intensity of my emotions in dealing with cancer. I’m tired of being reminded when my hips hurt because of what Femara does to me and when I can’t sleep comfortably on my right side any more because there is no more muscle or fat on that side of my chest to cushion me and when my arm aches because I’ve got lymphedema—I’m tired of all these things reminding me, in their quiet or insistent way every day, that I have had cancer. That I must be careful. I am tired of feeling like I need to stay on top of the latest breast cancer news and especially IBC news, so that if I need to, I will be a better-informed health care consumer in the future. I am tired of knowing so many people, all of a sudden, who have or have had cancer and seeing them get sick or seeing them die. I’m tired of this nightmare world that has become so normal, so customary to me. I just want to walk away from all of it.

But what if cancer doesn’t walk away from me?

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My arm hurts much of the time now. A dull, throbbing ache. I can wake up with it hurting. Wearing the sleeve may make the hurting less, but it may not. I wear my sleeve and do my manual lymph drainage, but the ache remains. I haven’t been doing any work to speak of outside, because my arm aches and I don’t want to make it worse.

This morning, after working at the computer for a few hours without my sleeve, I realized that the fingers on my lymphedema arm were considerably colder than the fingers on my other arm. I didn’t think lymphedema could do that, so I called Val, my lymph nymph, to double check. I was right. That’s not caused by lymphedema.

Then I called the triage nurse to see what she would say. Duh. Do they ever say anything other than, “You should probably go to the ER”? It could be some kind of blood clot in my arm, cutting off circulation and making my fingers cold and my arm ache. But maybe it’s not?

I decided to do some manual lymph drainage, put on my sleeve, and move around a bit to get my circulation moving. So far, so good…. The pain and swelling are still there, but my fingers have warmed up.

Now what do I do to make this constant aching go away?

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Oh, and guess what I found out on Friday? After Jody’s memorial service, a couple of us went out to eat, including one of the Breast Cancer Sisters Local #1 members. This woman was diagnosed at the breast clinic at the hospital two weeks after I was last year.

Remember how I was not allowed to choose my own oncologist? Remember how I was assigned to Dr. H (the new guy on the block, there, at the time) and when I said that I had hoped to consult with Dr. C or Dr. A I was told I couldn’t, because they weren’t taking new patients? I was forbidden to choose my own health care team. Remember that?

Well, when this breast cancer sister was diagnosed two weeks after I was, she was assigned to Dr. C.

Yes, it’s possible that Dr. C had started taking new patients by that time. I suspect, however, that what really happened is this: Dr. H’s case load had finally gotten filled, so the other doctors once again began taking new patients.