11-23-09 Update – Ponies and Pathologies

There have been a few bits of good news these past eleven days, plus one real disappointment. As regards the disappointment, it’s kind of like the lyrics to the theme song for the TV show “Monk”: “I could be wrong now. But I don’t think so.”

If I am wrong about what I see as a disappointing thing, however, then this would have to qualify as an almost unambiguously good week and a half.

Almost.

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In view of my impending layoff on the 20th, I consulted with an attorney recommended by a friend who does a lot of pro-employee stuff at the University where I work. The attorney was very interested in my case and talked about filing two suits to which I would be a party—one on a contingency basis and one for a fee. It was nice to be met with a warm reception. I’d like to tell you more about the details…but it would probably not be strategically wise to do so in an open forum like this!

I’m not sure whether I will go through with either suit…but that is certainly a possibility.

I think this is a pony amid the manure that is my current very uncertain job situation.

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Speaking of which— At the request of people who are very interested in the current and future status of the University program where I work, a special committee has been set up to evaluate what has been going on there and whether we are properly situated in the organizational hierarchy of the University. One of the first things that our director asked the committee to do was to forestall the layoffs of all eight of us who were summarily dismissed by the CIDD on October 20th effective November 20th.

The committee met on Monday evening this last week to consider the situation, then they told our director that they wanted to continue having a productive conversation with him about all things related to our program. He said that he was very interested in having this happen, but wanted to be sure that all of our jobs were safe, first. They responded by saying that they had assumed this.

And sure enough, on Wednesday this week seven out of eight of us (not sure about the 8th person, at this time) received formal notices that our layoffs had been postponed until January 15, 2010.

It is, of course, not a permanent situation. As it looks right now, I will be jobless then. But a lot can change in just a few months’ time. One never knows…..

Clearly, this was a pony.

And if I wind up really being laid off in January, there’s always the attorney pony.

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I also filed a formal grievance this week protesting my layoff. I understand that almost everyone else who was laid off with me did the same. This is a Good Thing.

For those who don’t work for the State of North Carolina, filing a grievance in such situations (and others) is one of the rights you have as an employee. In the case of employees of the University system, it’s a bit of a hollow right. Your grievance gets heard by a panel of your peers, but they do not have the power to decide your case. They only make a recommendation to the chancellor, and it is he/she who decides your fate. The chancellor is under no obligation to abide by the recommendation of the panel. And indeed, our previous chancellor at Chapel Hill made it a matter of policy to always rule against the grievant, no matter what the panel had recommended. The bent of our current chancellor, a man of a significantly different stripe, remains to be seen.

The value in filing a grievance, even if you don’t have a snowball’s chance of winning, is that it protects certain legal rights you have to pursue your case later, in other venues. Because of the details in my case, my attorney told me that I could have skipped over filing the grievance and taken my cause straight to the other venue…but I chose to follow the standard procedure and file it, in part to remain in solidarity with my co-workers who have also been laid off.

It’s been amazing, the amount of support and camaraderie that has been expressed toward us (and that we’ve felt for each other) in the last four weeks, since our forced departure was first announced. I’ve never felt closer to all of the people I work with—and never more grateful for them. They have been amazing.

This, too, is a pony.

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Meanwhile, I was busy this week chasing down the question of whether I’ve had a heart attack and how much damage has been done to my heart. I saw a cardiologist on Monday who did an echocardiogram on me and said that he could see no sign of muscle damage. He admitted that the ECG that I got from anesthesiology as part of my pre-surgery work-up showed an abnormality, but he said that it’s one of those situations where, for the general population, it *is* abnormal. But for me, it’s normal.

Figures, don’t it? Abnormal is normal for me. Sounds about right!

Then I had another MUGA test on Wednesday. I had one of these before I began chemo, to see if my heart was strong enough to withstand the damage potentially caused by Adriamycin, one of the drugs I was to take. I got a good reading (ejection fraction) in July, and very nearly the same reading this time in November. That means that the Big Red A does not seem to have damaged my heart much at all. Which of course is very good news.

In sum, it would appear that I did not have a heart attack after all. I just have a “normally” abnormal ECG.

Another pony.

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I went out this week and bought three soft, warm microfleece zip-front sweaters to wear after my surgery. They tell me I won’t be able to move my right arm much for several weeks afterward, so all clothing that pulls on and off over my head will be very difficult to manage. I need something that opens and closes in the front, which will be easier to get on and off. It will also make it easier to access the drains that will be dangling from the wound in my chest for a week or two. I’ll have to empty those a couple of times a day until the seepage from the wound goes down.

Since all of the warm sweatshirts that I have are pullover types, I had to try to find something that would do the trick. Fortunately, I found just the thing at Target…. I came home and put one on and just melted into the softness and warmth. It’s wonderful!

I also bought an inexpensive CD player that I can take into the operating room with me when I have my surgery. I’ve been listening to surgical support meditation CDs for several weeks now, to try to prepare myself for the upcoming event, and both my surgeon and the anesthesia folks have said I can listen to them in the OR, too. But they warned me that taking my iPod in there might be chancy, because sometimes things like that get lost in the transition between pre-op, the OR, post-op, and my room afterward. So I decided to go with an inexpensive player that I won’t regret losing if it comes up missing.

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Preparation for surgery….On the one hand, I plan and prepare for it nonchalantly, as if I were getting ready to go on vacation and had all these details to attend to before I could leave the house. On the other hand, if I stop to really think about what I’m doing, I get a hard knot in the pit of my stomach.

I know I'm going forward with the surgery, but I find myself descending into a place that's kind of numb with shock and horror at what's about to happen. We're cutting off my friggin' breast.

This is such an evil thing that has befallen me, this cancer. It is making me do things to my body that I would normally never do in a million years.

And there's this domino effect. Doing one necessary thing produces side effects that require me to do other things I'd never normally do in a million years, which produce their own side effects that have to be managed by doing things that I'd never normally do in a million years.

My world is careening out of control, all of a sudden, and I can't seem to figure out how to stop it. Where to put my foot down and say, "No more. I'll manage this situation like I always manage my health situations."

I know that I won't (can't) put my foot down with regard to the mastectomy...I'm not suggesting I should. But it just feels like I'm on this really evil roller coaster and I can't get off. The mastectomy is just the latest steep drop in the ride....I can see it coming. It is scary and evil.

It is an evil thing, to be in a position where you have to cut off your breast in order to try to save your life. How did this happen to me?

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On Friday this past week I met with my new oncologist, Dr. C. I really like her and I think that this relationship may turn out to be a much more productive and positive one.

When I would leave my old oncologist’s office, I would think about what he’d said and have a dozen questions to ask him or comments to make on things he’d said. I was very uneasy and my unease would only grow as the days passed. Since I couldn’t see him often enough to get through these questions and comments face-to-face, I’d send emails to ask them, instead. I tried to be brief and judicious (most of the time!)—but I was not brief and judicious enough for him and my team.

In the 48 hours since I met with my new oncologist, I have only one or two questions that I’d like to pose, and I can probably find the answers to those elsewhere. But I don’t (yet) feel the burning need to be in touch with her to ask more questions. For that matter, I haven’t felt that ongoing need with my surgeon or with the anesthesia folks. I had only a few additional questions to ask my radiation oncologist after my first meeting with her.

It seems to have been primarily my medical oncologist that provoked that response in me—that intense need to get clarity on the many things that seemed so unclear or disturbing after I’d talk to him. Things just don’t seem quite as unclear or disturbing when I talk to my other providers. I don’t know why…but they just don’t.

With this change in oncologists, I hope that chapter in my life is over. It was as unsettling and difficult for me as it was for my old team, I’m sure.

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Dr. C said and did several things that I really liked.

First, when she examined me she spotted some red areas on my abdomen, just below my sternum. She measured them and told me to keep an eye on them. If they don’t go away, or if they grow, between now and Wednesday, I am to call her. It could be a sign that the cancer has spread to the skin in my abdomen—which of course would be Not a Good Thing. However, it is more likely that they are a slight rash (which had been itching) from the adhesive used to fasten electrodes to me for the MUGA that I had two days before seeing her. Or it could be a manifestation of the same fungal problem that I’ve had off and on in the skin underneath my breasts, since being on chemo. There are several pretty benign reasons why I could have the rash/spots. What I liked was that she was that attentive to things on my body. It made me feel like I was being watched over very carefully.

Second, she made the mistake (!) of asking me about my feelings about my upcoming surgery. When I said I was surpassing frightened, she was able to immediately distinguish between fear of the cancer and losing my breast, and fear of the procedure itself—a distinction that not everyone seems to grasp…or appreciate. She asked me about it; I didn’t have to point out the distinction for her. When I then said that it was the procedure I fear, and I explained the exact nature of my fears, she listened patiently. She didn’t pooh-pooh my fears or dismiss them glibly by saying that she was sure everything would be fine. She just listened. I appreciated that.

Third, at one point in our conversation she turned to the computer and tried to pull up my mid-chemo images. I said that I didn’t have any, and I explained that my old onc doc had made it clear to me on several occasions—because I was uncomfortable with what he said and I asked on several occasions—that I was not scheduled to have any more images at all after the set I had in July, right after my diagnosis. No images mid-chemo. No images after chemo. (And we wouldn’t have the ones we had that day if I hadn’t insisted on having them.) No images after radiation. No images during surveillance. No images ever, at all, unless some new symptoms seemed to warrant them. She merely said that not doing images mid-chemo was not their standard protocol at the hospital.

I felt quietly vindicated! The “no images ever again” policy promoted by Dr. H as the right way to do things is not, in fact, exactly the way things are done where I’m receiving treatment. I didn’t say “I told you so!” to anyone…but in my heart, I was exulting.

Fourth, in the conversation that followed about whether or not I should have more chemo before going to surgery, she never once said something as simple as “Studies show that it’s not beneficial. You’ve had a clinical response. The next step is surgery.” Instead, we discussed the situation in more depth than that.

The bad news is, she disagrees with me, which is what I had expected, though I did nurture a hope that she would agree that more chemo was a viable possibility. However, she made it clear that it is my choice whether to pursue this or not. Whether she agreed to help me enact whatever decision I made, is unclear. My friend Cathy went with me and thinks that she said she would. I heard her say she wouldn’t.

It’s disappointing, but not unexpected. I have posed the same question to Dr. H, an oncologist at Duke University Medical Center, the folks in the IBC Clinic at M.D. Anderson Hospital, the folks in radiology at M.D. Anderson, my surgeon, a surgeon at Duke University Medical Center, my primary care provider, an on-line friend with a wealth of knowledge about IBC (in part because she is herself an IBC patient), my sister-in-law (a nurse) and now Dr. C. The answer is always the same:

“If you’ve had a clinical response after taking the standard formula for neoadjuvant chemotherapy, it’s time to go to surgery. It doesn’t matter that you haven’t had a complete response. *Any* response is good. Go to surgery now.”

At least they’re being consistent. I think their approach is short-sighted and wrong in view of what we know about the link between pathological complete response and long-term survival…but they are consistent.

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Here’s how the folks in Cancer Land look at it (at least, as I understand them):

Yes, it is true. Patients who have a complete response to chemo, as shown by having a cancer-free pathology report (pCR) after surgery, do have improved rates of long-term, disease-free survival. We wish everyone could have this kind of path report—one saying that the pathologist could find no evidence of cancer in the tissues he/she examined—but they don’t. **And we don’t know how to get them there.**

We don’t know the right combination of neoadjuvant drugs or the right dosing amounts or the right administration schedule to make someone have a pCR. All we know is that some get it and most don’t, and we don’t know why. In fact, only 8-12% of people (with breast cancer or with IBC in particular?) achieve this.

Having a pCR is not necessarily a guarantee of long life. Sometimes even people who got a pCR wind up having recurrences (which means becoming stage IV and being fated to eventually die from cancer). Similarly, having less than a pCR is not necessarily a long-term death sentence. After all, the five-year disease-free survival rate for IBC is several times greater than the rate of pCR. If lack of a pCR were a death sentence, the five-year rates would not be as good as they are (though they are still not as good as for regular breast cancer).

In fact, a pathology report is not an all-or-nothing thing, a test on which you get either an “A” or an “F.” It’s a continuum. Instead of getting an “A” on the test, you may get a “B+”—and in the world of cancer treatment, that’s not bad at all! Some people not only don’t get any response to their neoadjuvant chemo—their disease progresses while they’re on it. Getting any response at all, even a “C”, is good.

Since we don’t know exactly what to do to get someone a pCR, we focus on the next best thing—making sure that their tumor is small enough to enable us to operate and remove as much of the cancer as possible from their body.

Though we haven’t done any clinical trials to try to figure out how to get more people a pCR so that they’ll have a better chance of long-term survival (the whole idea is actually a rather new one in the field of cancer treatment), we’ve done lots of clinical trials to try to figure out how to get the maximum mileage out of different chemo regimens so as to give us the best shot at taking out all the remaining, post-chemo cancer through surgery.

Once we have administered this standard treatment and the patient has had any kind of positive response to it at all, it’s time to go to surgery. IBC is a very aggressive cancer, and there is no time to waste. Three weeks post-chemo is optimum. Four weeks is the very longest you should go after chemo before you have your surgery. Anything that would delay surgery at this point would increase your risk of not having a successful surgery later on, because in the interim the cancer could regroup and re-grow and spread throughout your body—even if you were on more chemo during that time period.

Could it be done? Of course.

But it’s not clear what kind of chemo would be best to use. If you’ve had dose dense Adriamycin, Cytoxan and Taxol, you’ve had the very best drugs in the very best combination and at the very best timing that we know how to give. Giving more of them—especially the Taxol—has not been shown to be effective. There is no gain in taking more of it, while there is increased risk due to the toxicity of the drug. And any other drugs—even other drugs commonly used in treating breast cancer—are not as effective as this regimen. So administering these other drugs after the ACT regimen would be administering drugs that have been shown to be less effective…which would open you up to possible re-growth and/or spread of your cancer. It could make successful surgery harder. It would be a gamble.

Going to surgery right away after the administration of the proven neoadjuvant chemo regimen offers the best chance of having a successful surgery. If the pathology report after surgery reveals that there was still cancer in your body after the chemo was finished, it’s not the end. We’re expending a lot of effort in Cancer Land to figure out what to do for the majority of people who do not have pCRs but whose path reports show that despite the chemo and the surgery, they have residual cancer. That’s what radiation therapy is for. To mop up the residual cancer. And for people with HER2 negative tumors, that’s what long-term hormone therapy is for.

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I’ve done my best, above, to present the case for surgery as those in Cancer Land have presented it to me, in as positive a way as possible. I wish I found it totally convincing and comforting…but I don’t.

I feel that modern cancer treatment for IBC is treating to the surgery. The surgical removal of the cancer from the patient is the focal point of all treatment activity. The chemo leading up to it is designed to make the surgery easier (clean surgical margins, smaller tumor) and thus more likely to be successful at removing the bulk of the cancer from the body. Radiation therapy and hormone therapy after surgery are designed to mop up what the surgery couldn’t get.

Surgery is clearly the centerpiece of modern cancer treatment for IBC. They treat in order to maximize surgical outcomes—not to maximize pathology outcomes. What matters is that the surgeon can get clean margins, can more easily cut out the tumor, etc. What does not matter so much is that the pathology report after surgery be as positive as possible. They’re prepared to take whatever the pathology report says, rather than treating the patient before surgery to try to produce a complete pathological response.

And I think that’s a mistake.

Dr. C says that they’ve only recently come to understand that a complete response to chemo, confirmed in the pathology report, is linked to improved long-term, disease-free survival. (Kinda seems like a “Well, duh!” thing to me…but, whatever….)

Fine. So we only recently became aware that pCR is linked to improved survival. It appears to me that everyone is sitting on their hands on this, unwilling to see that this has huge implications for how to improve patient outcomes.

**We need to improve neoadjuvant (before surgery) treatment with a view toward improving the post-surgical pathology report. That is more important for patient outcomes than whether the surgeon can get clean margins and cut out a bunch of tumor.**

Think about it: The surgeon can get clean margins already today, but what they remove from the body can still be chock full of cancer, and the pathology report will reflect this. The patient’s long-term prospects for a disease-free life are diminished.

If, on the other hand, we’re trying to do more than give the surgeon clean margins—if we’re trying to give the patient as good and cancer-free a pathology report as possible—then we are acting more aggressively to reduce and remove the cancer from the body *before* surgery. Surgery has ceased to be the focal point of treatment; the pathology report has replaced it. A side benefit of this change in focus is that the surgeon will likely have an even easier time of it.

I predict that in 5 years the mavens and wonks of Cancer Land will finally have come to see this and treatment protocols will begin to be shaped accordingly. Within 10 years this kind of orientation toward treatment will be the new “thing.”

It will come too late for me.

Today, I am being told that what I want cannot be done. I am being told that it’s too dangerous. Too much of a gamble. That we have been treating to the surgery, and it’s now time for surgery. And so, to surgery I will go.

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I am submitting to surgery, but this does NOT mean I feel that I "own" the surgery or its results. I owned taking chemo. I accepted responsibility for taking it, including responsibility for dealing with whatever outcomes may result from doing so—including heart problems. But no one will help me do the things that are necessary for me to have that same feeling of ownership about this surgery.

In my gut, I cannot shake the feeling that what I want is right, and what they are telling me to do is wrong. Surgery is the right choice, but it’s happening at the wrong time. And my long-term, disease free survival is in jeopardy because of it.

I am submitting to “the experts” by doing no more neoadjuvant chemo and having surgery now…but I do not feel empowered by what I am doing or responsible for accepting the outcomes of it. This violates every principle I have for how I conduct my medical affairs. It makes me want to vomit, that I am forced into this. But I seem to have no choice, because I have no willing collaborators and I can’t do this alone.

And if I get a recurrence, in years to come—if I become a stage IV cancer patient, fated to die eventually from the cancer—I will always believe that it’s the fault of the experts. I took a chance based on their consistent recommendation that I do things their way—treat to the surgery instead of to the pathology. And they were wrong.

If we had tried harder to get me to a point where I had a better chance of a pCR, recurrence might not have happened, I will feel. I wanted to do that. I was denied the opportunity. And I will blame my doctors.

I do not "own" the outcome on this.

That's how I feel.

I could be wrong now. But I don’t think so.

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Dr. C suggested that I should re-think my analogy. I’ve been comparing getting a pCR to taking a big test. You want to study your brains out for it (take as much neoadjuvant therapy as possible). You want to do some practice runs on the test (do imaging, maybe even re-biopsy tumors, etc.) to see how you’re doing and what other kinds of studying (pre-surgical therapy) you need to do. And then you take the big test (have surgery) and see how you do on it (get your pathology report).

The only alternative analogy that I can come up with for cancer treatment for IBC in 2009 comes from my own field of study: religion.

In Cancer Land in 2009, getting a pCR is viewed more or less an act of God. It’s not something we can—or think we can or should—try to control. It’s an act of God. A gift. Like faith.

It is by the grace of God that anyone has faith, says the Christian tradition. You can’t work up faith; you either have it, or you don’t. God has either given you that gift, or God hasn’t. And there’s nothing you, as an individual, can do to change that. You can’t earn faith. You can’t do anything to deserve it. It’s a gift, given (or withheld) by the inscrutable grace of God.

It’s the same thing with a pCR. It is by the grace of God that anyone gets a pCR, say the doctors in Cancer Land. You can’t work it up; there’s nothing you can do to “earn” it. And there’s nothing we can do to change that. The forces that produce it are mysterious and inscrutable. So there’s no point in trying to improve/augment neoadjuvant therapy in order to try to achieve it.

Maybe today having a pCR really is like having faith. I don’t think this is how it should be treated by the medical profession…but it is, nevertheless, how it’s treated.

I can hope that with my upcoming surgery I will be so blessed by the grace of God as to get a pCR. But it does not look promising.

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This morning I went to the hospital to view my before chemo and after chemo MRI images. The radiologist says that, in ballpark terms, the lymph nodes are 80-90% reduced in size and have a more normal appearance. The tumor on the chest wall is about 60% reduced in size, but it is still spiculated—or having the general shape that cancerous masses tend to have. And there's about a 20% reduction in the involvement of the skin of the breast.

That's good.

But it's not a pathological complete response.

If we are treating to the surgery -- making the surgery the centerpiece of what we're trying to accomplish -- then this is very good. The cancer is not as prominent in my breast and lymph nodes as it was at the time of diagnosis.

If we are treating to the pathology -- making the best possible pathology report the centerpiece of what we're trying to accomplish -- then this is good, but not yet good enough. There is still cancer present.

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I spoke with a “Dr. Z” today. I told her that while I acknowledge the improvement that I’ve made on chemo, I am just not comfortable with going to surgery right now. I pointed out that cancer treatment in 2009 appears to be treatment for the surgery, not treatment for the cure. I said, with tears in my eyes, that despite the fact that all of the health professionals say I need to go to surgery right now, in my gut I feel this is the wrong thing to do. I need more pre-surgery treatment.

To my great surprise, she sat there and agreed with me! And I didn’t get the feeling that she was just humoring me. She seemed to genuinely appreciate and agree with my point. It’s amazing, the effect that has on one!

I showed her an article that I had brought to give to Dr. C. When Dr. C and I visited on Friday, she said that she wanted me to hurry up and get through surgery and through radiation so that she can start me on hormone therapy—aromatase inhibitors (AIs). She thinks that these drugs will give me the largest benefit in controlling the cancer and preventing its return.

Well, on Saturday I happened to find an article about a clinical trial done in Europe (mostly in the U.K.) in which AIs were used pre-operatively to reduce the size of tumors. For most of the women in the study, they didn’t have any effect. But for one sub-group, they had a significant effect: women whose tumors were so large that they were scheduled for mastectomy. Those women saw such significant shrinkage of their tumors that they were able to have breast-conserving surgery instead of mastectomy.

If Dr. C would do this, it might satisfy both of our needs. She wants me to take AIs as soon as possible; I want to try more neo-adjuvant therapy. We could try this, closely monitoring my progress—or lack thereof. If it begins to look like we’re losing ground with the cancer, then we go immediately to surgery. Otherwise, we don’t do surgery until after the course of AIs is completed in a couple of months.

I don’t expect that doing this will change the kind of surgery I have to have. I will still have to have a modified radical mastectomy with axillary node dissection. But I might come closer to getting a pCR, if we did this. And that is my goal: the improved chance for a long and disease-free life that comes with having a pCR.

When I showed this article to Dr. Z, she immediately focused in on the name of the lead researcher in this study. She said that she was pointing this out in the name of patient education: I should try to find him and call him to ask briefly about my case. (I did this within the next hour or so…I’m waiting for a call-back from the U.K. now.)

Then Dr. Z walked me out. We had gone deep into the bowels of the mammography clinic to get to the computers where we could look at my images. Without her guidance, I would have had no clue how to get out again. But to my surprise, she didn’t stop once she’d gotten me back to the door leading to the mammo waiting room. No, she continued walking with me until we were out of the mammo clinic entirely and standing, isolated, in the very large foyer of the hospital.

I wish I’d had my tape recorder going, to capture her words and replay them to myself on those days when it seems that all is lost. But I didn’t, so I can only give you the gist of what she said to me. She told me to hang in there and not to quit asking questions and speaking up and asking that we treat for the cure (not for the surgery). She said that lots of other people can’t or won’t speak up, and she encouraged me not to let my voice be silenced. I was stunned all over again.

It is, after all, she said, my body and my life. I said yes, and that despite what some seem to think, I am the captain of this ship—and no one else. She just slightly nodded her head. She seemed to know exactly what I was making a reference to (nurse Susan’s comment to me in late October when she said that no after-chemo images were necessary because Dr. H would not give me more chemo no matter what, because he was the captain of this ship). She said she hoped that things work out for me. I said that I appreciated her support and the fact that she made me feel NOT like a putz or a difficult person.

As I walked away, I realized that Dr. Z was no doubt a part of the weekly Breast Conference that takes place at the hospital and that she no doubt had been thoroughly informed about everything that has transpired with my old team and my request for a new oncologist. She wanted to show me that she essentially supports me…which is why she walked me all the way out to the foyer and gave me that encouragement.

It was another pony.

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And the ponies didn’t stop there.

After talking with Dr. Z, I tried to deliver the article about using AIs in neo-adjuvant treatment to Dr. C’s nurse, Cathy. Since I’ve never met Cathy and don’t know where she works within the hospital, I tried to call her, only to learn that she wasn’t in the clinic today. So I made a few inquiries and found my way to the hematology-oncology clinic, where I planned to find someone who could put the article in her mailbox for delivery to Dr. C tomorrow.

As I was standing there making these arrangements with Jean, one of the staff in the Breast Clinic, who should walk in but Betsy, one of the oncology nurses from my old team. Betsy overheard what I was requesting and said that she was going to be going to the area where Dr. C is later today, and if I trusted her, she could deliver the article for me.

Though I’ve had my problems with Betsy, I’ve never suspected that she was downright malevolent toward me, so I felt that it would be alright to entrust her with this mission. I began to have my doubts, though, after Betsy disappeared into the next room, my article in her hands. Jean asked me, then, if I had another copy of the article. I said yes, I did. It’s at home. “Good,” she said.

Then she winked at me and said, “I tell you what. I’m going to send an email to Dr. C and tell her that you were here to give her an article on the neoadjuvant use of AIs and that you’re sending the article to her via Betsy.” And she encouraged me to follow up with Cathy to make sure that Dr. C received the article, since time is of the essence for me. My surgery date is rushing upon us.

Once again, I was stunned. It seemed to me that Jean had heard about “the difficult patient” and how I had requested a different oncologist…and she wasn’t buying into the idea that all of the problem lay with me. With her wink and her taking the initiative to send an email to my new oncologist, on my behalf, I once again got the feeling of support and approval.

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It’s an amazing thing. Although I have been perfectly comfortable with my decision to leave my old oncologist and find a new one, I have feared that I was making myself odious to everyone at the hospital by making this request. After all, it is not every day that a patient does such a thing. It is a testimony to a failure of the doctor-patient relationship, in some way, and I suspect that there has been some attempt to do a post-mortem on my relationship with Dr. H and his team of nurses in order to figure out what went wrong.

While it is clear to me that some blame has been placed on me (Dr. C’s comments about my emailing habits with my old team; an emphasis from Dr. Z today on my being succinct when I contact the doctor in the U.K.), it is equally clear that not all blame has been placed on me for what went wrong. And that there are people within the hospital/Breast Clinic system who, on the whole, support me and do not think of me as “a problem patient.”

This is good to know. It means I can walk through the hospital with my head held a little higher, instead of keeping it bowed because I think everyone thinks of me as a troublemaker.

And that is definitely a pony.

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I have to end this blog with some discouraging news. My parents have been planning to come out from Kansas to help me at the time I have my surgery on December 3rd (assuming my quest for more neoadjuvant therapy does not come to fruition and the surgery date will stand). But I learned this past weekend that my mom has been really sick since last summer and is getting sicker. My folks have been hiding from me the full extent of how sick she really is. They kept thinking that she would be well enough for them to make the trip out here by the time my surgery rolled around.

Unfortunately, as I now know, this is not the case. They need to stay close to home, because my mom simply can’t travel like this. And if she was here, she’d be in no shape to be of much help to me. My dad would be a big help, but my mom would be too sick, herself. And my dad would probably go out of his mind trying to tend to two sick people at once!

I’ve begun doing what I can to patch together the help I’m going to need. I’ve put in an application to have a cleaning service come out once a month to dust, clean the bathrooms, etc. And I’m going to request a home health nurse come to my place every day for the first two or three weeks to help me dress my surgical wound, manage the drains that will be hanging out of the wound, and help me take a shower every day. My son and daughter-in-law are going to come stay with me and help me on the weekends (Friday evening through Monday), but they have jobs that they have to go to during the week. My other son is going to be roped into this caregiving thing in some way, too.

But in general, I am going to need more 24/7 help than what they can give, and I’m hoping some of you will be able to fill in the blank spots.

For at least the first two weeks, I cannot use my right arm at all. My lymphedema specialist has told me to do nothing—no cooking, no cleaning, no anything. She says I need to sit and read, watch TV, sleep…whatever. But I need to let someone else handle the daily household chores, because the more activity I try to undertake on my own in those first two weeks, the more fluid my body is likely to produce as a response to the stresses of surgery, and the more likely I am to acquire lymphedema because my body will not be able to drain the fluid from the surgical site fast and efficiently enough.

I need everyone’s help to manage this situation. Friends are putting together a schedule for live-in “babysitters” for me during the weekdays, as well as for such discrete tasks as preparing meals, taking me to my medical appointments (until I can drive on my own, again), etc.

If you would be able to help in this way, please email me at denzler@hughes.net and I will pass your name along to those who are coordinating this schedule.

And thank you.… I suspect there are a few more ponies waiting for me, in all of this.