4-16-10 – It’s All About Survivorship Now –

It has been a busy month since I last wrote in this blog.

My parents left on March 15th, which was very hard for me. I miss their company, and I miss the practical, hands-on support they were able to give me. Even before I got sick, I often felt overwhelmed with everything that I need to do on my 4.5 acres, to keep up the property, the house, etc. These feelings were much more intense after I got sick, when everything fell apart and chaos (on all levels!) ensued.

They still exist now, as I have much diminished energy reserves and am trying to dig out from under almost a year’s worth of this inattention. I feel so very tired and overwhelmed, much of the time. I just can’t seem to keep all of the balls in the air––dealing with “new business” as well as with all of the “old business” that has been languishing for months and months. I feel very frustrated sometimes.

Still, it was time for my parents to get back to their home and their lives, and it was time for me to move on with putting my own life back together. It’s been lonely around here…but I’m getting used to living on my own again.

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The opportunity to mope around and feel sad and miss my folks was diminished by the need to prepare for the oral phase of my grievance against the Carolina Institute for Developmental Disabilities (which had become an occupying force at the autism program where I worked), which occurred on March 18th. As you remember, the CIDD laid me and a number of others off last fall, but due to an outcry that was raised about their overall conduct (our layoffs being just one piece of that), the layoffs were postponed until January of this year. A month after our layoffs occurred, the CIDD was removed from control of our program.

This meant that I was in an odd position, but ultimately a very good one. I used the University’s formal grievance process to object to my layoff, and my adversaries in the matter were not the people who *really* ran my program, but the interlopers who had since been removed from control. Those who really ran my program were not in favor of my having been laid off, and in fact a few of them came and testified to this effect during my hearing.

I was pretty nervous about doing this grievance. First, face-to-face confrontation with people with whom I do not agree—people whom I no longer like and respect, in fact—is not my strong suit. Second, I don’t tend to think quickly on my feet, and in an oral, quasi-courtroom type of situation, you need to be able to do that. Third, I was afraid that my chemo brain, which makes me less cognitively sharp, would make it all worse. But with the guidance of my support person, Steve, I did my best to prepare my case and face those who I felt had done me wrong.

The argument of the CIDD folks was that they had to lay me off because of the statewide budget cuts, pure and simple. There was no money. Someone had to go. I was not making a significant contribution to the needs of the program (witness the lack of grant submissions in the nine months since they had been in control), so my position was eminently expendable. And, they said, rather than being discriminatory in laying me off in the middle of my cancer treatments (which caused a lot of absenteeism), they had been very concerned about my welfare. After all, they said, they had allowed me to get voluntary shared leave so that when my own leave ran out, I would have other leave to draw upon.

I argued that my track record of helping to bring in external funding was significant, and provided records demonstrating this. These are records that I had shared with the CIDD last June, long before they laid me off, but their representative said that they had not taken that information into account when deciding to lay me off because, frankly, they just didn’t believe me!

I pointed out that the lack of grant applications (which is, in truth, just one facet of what I did) could be accounted for by noting the administrative chaos that their intrusion into our department had caused––chaos that prevented the faculty from being able to concentrate on things like seeking grant money, because they were just trying to keep the doors open and the lights on in the face of the massive administrative inertia the CIDD had caused.

I also pointed out that during half of the time when no grant applications were being submitted, I was missing a lot of work due to my cancer treatments. Thus, their expectations were unreasonable given my disability, and they were not taking that into account but were in fact using it against me when they said that my lack of productivity was a reason for their deciding to eliminate my position.

I pointed out that while it might appear that they were being accommodating and generous in allowing me to get voluntary shared leave, they knew at the time they granted this request that they were going to lay me off and, at the rate I was using leave time, they’d never actually have to pay out on any of it. By the time I used up all of my own leave, I’d be gone. So their accommodation really was more of a gesture than a true commitment to help me.

I pointed out that there was actually money in the budget that could have been used to pay my salary, if the CIDD had not chosen to spend tens of thousands of dollars every month on outside consultants who were retained to do tasks that may just as well have been done by people already employed at TEACCH. Those expenditures continued after I had been scheduled for layoff…so the money was there. They just didn’t want to spend it on my salary.

I pointed out that my true supervisor––the person who knew what I was doing and gave me work to do (the TEACCH director), not the person who was assigned by the CIDD to “supervise” me but never acted like a supervisor with regard to my daily work––was never consulted about my layoff. So when the CIDD decided I was contributing nothing to the program and my position could be eliminated, they had no reasonable grounds upon which to make that assessment.

My grievance was heard by a three-person panel. They found for me on two points and against me on four points, then sent their recommendations to the Chancellor, who has the final say in all such matters. I found out on Wednesday this week that the Chancellor found against me on all points but one: He said that the layoff procedure had not been done correctly in my case because the CIDD had not exhausted all other possible remedies for the budget problems before eliminating personnel but had, in fact, continued to expend money on outside consultants that could have been used to pay my salary.

In view of this, the Chancellor ruled that I should be reinstated in my job. I’m going to go back to work!

This kind of thing almost never happens, so it’s a really big deal that it did happen for me. I told someone that I thought it was because I have/have had cancer––that if it hadn’t been for that, my argument about the finances would not have been found convincing. He said I could be right, but if so, it’s evidence of the compassionate face of the University, which is something that the University needs to cultivate. I guess, when it comes right down to it, I’m pleased and honored to be the recipient of this compassion.

As luck would have it, on Monday this week, before I got the Chancellor’s letter, I had filed a formal complaint with the Equal Employment Opportunity Commission alleging disability discrimination. (I thought my time limit for filing such a complaint was running out and I needed to act or lose my legal rights. I had been reluctant to do this, and I put it off as long as possible.) I’ll have to consult with my attorney to see what comes next, now. As I understand it, my being reinstated in my job makes no difference, because being reinstated doesn’t change the past. It only remedies what happened in the past. And it’s the having happened that counts. Still, to me it seems to throw into question just what I should do about the EEOC complaint.

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My radiation treatments may have ended on March 10th, but the burning didn’t end then. I continued to fry internally, and, as expected, my skin broke down along my mastectomy scar line. There were oozing sores and scabs, and it hurt to wear my foob and a bra––so I didn’t for several weeks.

I never thought that I’d get to a place where I’d be comfortable going braless in public, much less in “formal” situations (like a grievance hearing), at my age and given my weight and body shape. But as with so many other things with this cancer, I was surprised at how I adjusted to the need to do this. Fortunately, the weather was still cool enough that I could dress in layers and in ways that tended to de-emphasize my lack of appropriate foundation couture.

What bothered me more was the fact that the breakdown didn’t happen all along the mastectomy scar line. The radiation boost along the scar line that produced the skin breakdown was given to me from two angles: the front, and the side. The part that broke down was the side. The front got redder than the rest of my chest, but it never formed blisters and scabs like the side did.

This worried me. It was not what I had expected. I expected sores and scabs. To not get them made me wonder if everything was alright. So one day when I was in the clinic talking to my med onc, I asked my rad onc to pop up and take a quick look. She did.

I guess it was all OK. At first she said that she was consulting with the nuclear physicist who had helped to design my radiation program and they would have something else for me. When she left the room, I told her that it was her call, because although I hadn’t expected this, what was more important was that I didn’t know if this was *she* had expected. I just wanted her to see it and know what was going on.

I have not heard from her since, so I guess the different degree of breakdown between the two sites was normal and expected. Still, if I get skin mets along one of the two halves but not along the other, later on, I’m going to think back to this situation and wonder if everything really *was* OK, after all.

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I began taking my anti-hormone pills on the Saturday after I finished my radiation treatments. So far I’m not noticing too many side effects. I have developed some really uncomfortable joint pain in my right hip and my right leg, which could be caused by the Femara. So I started taking another nutritional supplement to try to mitigate the inflammation…and it appears to be working. So far, so good!

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The whole question of whether I will take bisphosphonates to try to prevent recurrence of this cancer as bone metastases has become a bit of a circus. Granted, an anxiety-producing circus, but a circus nevertheless.

Back in the fall I had asked Dr. H, my previous onc doc, how often this cancer tends to come back in the liver as compared to the lungs as compared to the bones––the three sites that breast cancers favor. He indicated that it could be anywhere, and that’s all the info he would give me. He refused to quantify anything.

But in researching the question of whether I should participate in the clinical trial of bisphosphonates for recurrence prevention, I had discovered part of the answer I needed. On a drug company website touting bisphos for recurrence prevention, it said that when breast cancer recurs, it comes back in the bones about 65-75% of the time. I’ve seen the figure quoted elsewhere since then. That really moved me toward the conviction that I need to take some form of this drug, because among all of the breast cancers, IBC is notorious for recurrence.

I met with my onc doc, Dr. C, on March 16th and went into the meeting with the idea that I need to take these drugs. The only thing to be determined was what form (oral or IV), how much, and how often. But when I got to the consult, it seemed that far from encouraging me to do so, as she had in December, she was discouraging me from doing so.

She said that the studies had only been done on premenopausal women, not post-menopausal women like me; that there were these potential side effects which, while very rare, could be nasty if they occurred; and she felt that it was perfectly legitimate to not take the drugs, given these unknowns. I was confused at her seeming change of heart, but I figured if that’s how she felt, then I would just not take them, after all.

When I got home and had a chance to think about it, though, I found that I was really uncomfortable with this. I wrote to her nurse to ask why Dr. C had wanted me to take the drugs before the clinical trial had closed, but after it had closed she no longer thought it was necessary. This led to a second meeting with Dr. C, on March 24th.

As it turns out, it’s not that she didn’t think it would be wise for me to take bisphos. She was simply trying to approach the question from what she felt was my point of view (being notoriously risk-averse when it comes to side effects from my treatments) and validate that approach. She didn’t realize that I’d come in having moved in my thinking more toward her point of view, which is that they would probably really be a good idea for me to take. So we had talked right past one another in our earlier meeting. She said she was happy to give me a prescription for Boniva, the once-a-month bisphos pill, and that was that.

Except that when I got home, I found I had more questions. In the clinical trial, participants are getting far higher doses than this. They are taking once-a-month pills on a weekly or daily basis. Or they are getting mega-infusions of IV bisphos (Zometa). So would I be getting a therapeutic dose by taking Boniva once a month?

I sent another message to Dr. C via her nurse, but received no answer. So I scheduled an appointment with Dr. M, the oncologist in Cary whom I had consulted right before my surgery and whose approach I had really loved. I told his scheduler that I wanted to discuss medications, and I was given a mid-afternoon appointment.

Dr. M saw me about an hour and a half past my scheduled time, which was fine. I know he tends to run late and I had come prepared to entertain myself while waiting for him. When I did get to see him, he launched into a discussion of the big clinical trial out of Austria that had first shown a really recurrence-protective effect for bisphos, describing in detail not only what was done in the trial but lots of extraneous information (as I later realized).

My head began to swim. I just couldn’t keep up with the various drugs names he was throwing around (both in brand-name form and in chemical form), the various “if this, then that” scenarios he was describing, etc. And there were too many rabbit trails in the info he was sharing. For instance, I had no need to know that Lupron is the drug used to induce ovarian shut-down in the pre-menopausal women in the clinical trial and that it is also used to treat other forms of hormone-based cancers such as prostate cancer in men. The info Dr. M was providing to me, while interesting, was coming at me too fast, with too much detail for me to absorb, and it was generating more questions rather than making me feel that I was getting my original questions answered: how much and what kind of bisphos should I take to try to prevent recurrence in the bones?

I tried to take control of the conversation by parroting back to him the bottom line of what I thought he was saying, and after a try or two, he said yes, that I’d gotten it right: “In the clinical trial you’re describing, taking Boniva once a month (an oral bisphos) had the same biological activity as taking Zometa (an IV bisphos) once every six months.”

But a few minutes later, after more rabbit trails in the conversation, I tried to re-direct the conversation back to my essential, original question by repeating my parroting from before. “Taking Boniva once a month (an oral bisphos) had the same biological activity as taking Zometa (an IV bisphos) once every six months to prevent recurrence in the bone.” This time he said no, that wasn’t quite right.

It turns out that his frame of reference, when he was talking about biological activity, was preventing osteoporosis in cancer patients taking Tamoxifen or an aromatize inhibitor like Femara.

I told him that this is not my concern. (I was very, very clear when we began the conversation that my concern was preventing cancer recurrence in the bone.) He responded that he *was* interested in that. I said fine, he can be. But I’m not. I was there that day, I repeated, to answer one question and one question only: What kind and what dose of bisphos would be most effective to prevent recurrence in the bone?

Then he began hedging, saying that while we know that both forms of the drug have the same biological activity with regard to preventing or reversing osteoporosis, we don’t have good data on this as regards bone met prevention. We can assume that they are same, but we don’t know this. He said that he imagines that the IV form is probably somewhat better at preventing bone mets, but he can’t say for sure.

I asked him why the dosages given in the clinical trial that just closed here––the one I didn’t get into––are so much higher than the dose I would take if I just took Boniva once a month. He said he was surprised that they were so high and that one reason they may have been set at such great levels is because oncologists tend to think like that: if a little is good, more might be better. So they test that theory. Another reason is because pharmaceutical companies often try to help with such studies, and they of course have a vested interest in a “more is better” approach.

But he said all of these things with so many attendant rabbit trails of info/explanation and caveats that I wasn’t sure what I was hearing. Meanwhile, he was giving clear indications that he was finished with our discussion and was going to leave the examining room.

My head was swimming, I was not sure that I had a firm answer to my original questions, and I had a dozen more questions to ask based on the info he had tried to share with me. I wanted to be sure I’d understood him, and I was not at all confident that I had. I told him that I was confused and unsure that I’d understood him. He patted my arm and assured me that he thought I had understood just fine. He told me that if I wanted to talk like this again, next time I shouldn’t schedule the appointment for the middle of the afternoon but should schedule it later, so we’d have more time. And he left.

By the time I got to my car, I was in tears. I spent the evening trying to sleep, to avoid the depression and anxiety I was feeling. I needed to make decisions about what else I am going to do to try to maintain my NED state, and I needed information to help me make those decisions. Instead of getting clarity when I went to him, I became more confused. I had gone in feeling just fine, and left feeling so depressed and hopeless that I didn’t think I could bear it.

The sad thing is, if he’d just let me drive the conversation instead of taking control, himself, we could have done this so much more efficiently! As it was, he’d spent about 45 minutes giving me lots of information, some of which was frankly irrelevant to my concerns and some of which was just too much, too fast for me to absorb. All of it took too long to frankly and bluntly address my core question, which was very simple. I kept having to dig around for the answer buried in all of the info he was providing, because it was never just simply and straightforwardly presented to me.

He should have given me the blunt, straightforward answer, and when he was sure I’d understood that, he could have gone into the story about the clinical trial that is the basis for his recommendation and how it was conducted and how many treatment questions the trial was designed to answer and what those various answers were, plus all of the rabbit trails of info that he seemed to be compelled to share in addition.

Better yet, he could have given me the blunt, straightforward answer, and when he was sure I’d understood that, he could have gone into the story about the clinical trial that is the basis for his recommendation, giving me only the bits of info from the trial that are directly relevant to my question, instead of trying to share all the bits of info from the trial.

But he didn’t. He spent about 45 minutes with me, doing a job that could have been done in 15-20 minutes had he let me drive the conversation. He was good at trying to share his knowledge, but that sharing did not allow me to effectively and efficiently get the info I wanted and needed from him. Instead, it made me unsure that I’d gotten the info I came to get, unclear about my grasp of (and the direct relevance of) the additional info he had tried to share with me, and depressed and anxious as hell by the time I left his office.

It just never seems to end. It never seems to end. God save me, but I’m growing to hate the medical profession––most particularly, physicians––more and more all the time. I owe them my life––twice now!––and yet I want as little to do with them as possible. They are such a disagreeable, difficult lot to have to work with!

Shame on me. I should be more grateful.

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I’ve found that in the wake of my cancer experience, I have a new reaction to the medical shows I used to enjoy on TV. I didn’t watch too many of the “reality” medical shows – like “Trauma in the ER” or anything. But everyone once in a while I would.

When I saw one recently, an ER physician was doing a voice-over about how patients in accidents come in all injured and in shock, needing immediate medical care, and there are all of these strangers swarming all around them, hurting them, doing unspeakable things to them––jabbing them with needles, shoving tubes down their noses––and they are totally out of control. He commented on how frightening that must be. Inside, I was screaming, “YES!!!! YES!!!” and my stomach was clenching up into a knot.

I can’t watch “House” any more without having mild anxiety attacks. House and his team don’t know what’s wrong with a patient, so House tells them to give the patient a certain treatment. If he goes into cardiac arrest, they’ll know that X is not the proper diagnosis. If he doesn’t, they’ve solved the problem. And I’m sitting there feeling my blood pressure skyrocket and my stomach knot up and my throat get tight and tears come to my eyes.

I used to enjoy that show.

A couple of days ago I watched a M*A*S*H rerun. In this one, Hawkeye and Hotlips had stayed behind to take care of a spinal cord injury patient who couldn’t be moved while the rest of the camp bugged out because the North Koreans were coming. At the end of the episode, the camp moved back to its original location and Hawkeye loaded the injured soldier, by now stabilized, onto a chopper to be taken to Tokyo for further treatment.

And you know what my reaction was to dear, beloved Hawkeye? To the doctor that any one of us would love to have as our own? I found my stomach knotting up again and tears coming to my eyes and anxiety rising as I thought, “Is he really safe to move? How do you know? You are playing with that man’s life and wellbeing! Do you know what you’re doing to him and how that’s going to affect his life?!!!”

For the first time, I didn’t even trust Hawkeye.

But I really used to enjoy that show.

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I came home from my talk with Dr. M and emailed Dr. C’s nurse to ask her about oral versus IV bisphos. She responded that Dr. C would be happy to put me on IV Zometa equivalent to what is being given in the clinical trial that just closed, if I’d like. But she will not give me more of the oral form of bisphos (though trial participants on the oral forms are getting much higher dosages than I am currently prescribed to get).

I’m not sure what I’m going to do. I know I’m going to take a bisphos; I’m not sure what kind.

There is reasonable certainty that the IV form of bisphos will help to prevent bone mets—which occur in 65-75% of breast cancer recurrences. There is less certainty that the oral form of bisphos will do this.

If I take the IV form, Zometa, I understand that it’s very, very expensive. Because using it to prevent recurrence is considered “off label” use (not approved by the FDA), my insurance company may not want to pay for it. So what do I do?

Ironically enough, if I don’t take it for prevention now because I can’t afford it, but then I get bone mets later, the insurance company *will* pay for me to get much more of the drug then, to try to bring the bone mets under control! Because *that* use of the drug is FDA approved.

But by then I’d be stage IV, meaning much more likely to die of the cancer and certainly much more likely to cost the insurance company a lot of money as I fight for my life again.

There is a generally equivalent form of the IV drug (called pamidronate) that has been around for a long time and is therefore about 25% of the cost of the Zometa. But it’s not as easy to administer, so Dr. C’s nurse says she doesn’t think Dr. C would give me that.

The cheapest form of bisphos, the oral form, will cost me $55 a month out of pocket. I have no idea what the two IV forms would cost, but I’m gathering it’s quite a bit more than that!

It comes down to what I can afford to try to stay cancer free. The price I can afford to pay to try to live. Balancing the cost of the drugs, against their likely effectiveness, against my will to survive. Quite a trick. It would be less tricky if the insurance companies would pay for an ounce of prevention, rather than insisting on only paying for the pound of cure.

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Dr. C and I agreed upon a surveillance plan for me––something more than “watch and wait,” but not a full-court press of imaging, etc. We decided that every three months we’d run two blood tests for tumor markers plus a liver function panel. We will only chase down test results by doing imaging (1) if there is a quick and steep rise in one of the blood test results, or (2) if there is a slower but continual rise in one of the test results over several three-month intervals. To begin the process, we did blood tests now, when I’m as nearly cancer-free as I have likely been in quite some time.

One of the tumor marker test results was very interesting, I thought. It’s called CA 27.29. When I was newly diagnosed, the test came back with a reading of 32.5. Any reading less than 38 is considered “normal.” So even when I had full-blown IBC, the test was, technically, “normal.”

At the end of my active cancer treatments, the test came back with a reading of 17.8––almost half of what it had been at the outset.

Who cares what the standards are for “normal”?!!! Now we know what “normal” is for me, and what constitutes a warning signal that something is wrong.

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A word on the hair front: chemo curl has set in, and I’m getting lots of rave reviews about how cute my haircut is. I just tell people that I paid thousands and thousands of dollars to look this cute!

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Survivorship continues to be a bit of a challenge, but I think I’m getting better at it.

I got a rash on my chest on the IBC side, just outside of the radiation fields. When it didn’t go away, but seemed to be spreading, and then spread onto my upper arm on the at-risk side, I began to get concerned. Was this skin mets? A contact dermatitis? Or cellulitis? The ladies on the IBC listserv suggested that I needed to get it looked at, so I called one of the breast clinic’s nurse practitioners. By the time she called me back two days later, I had managed to get it to recede, so I didn’t go in for an examination. But it was close!

On the other hand, I got another cold. My second in a month’s time. Clearly my immune system isn’t up to par yet. I got all wheezy and congested, and I began coughing quite a bit. But it was clear to me that I had a cold, not radiation pneumonitis from my treatments. So I figured that was good. I could come to the most logical conclusion about what was going on and deal with it on that basis, rather than leaping to the conclusion that it could be cancer or its treatment effects.

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Close to the end of March I began participating in a UNC program for breast cancer survivors called “Get Real and Heel”––a play on the UNC “Tarheels” sports branding. The program is chock-full right now, so I’m on a six-week waiting list, but they did the intake procedures for me. I’ll be all ready to go when they’re ready for me.

The program is a physical fitness program designed to help breast cancer survivors recover as much of their health as possible after their treatments and emerge with some health habits (exercise!) that studies have shown will help them reduce their risk of recurrence. It’s a wonderful program, I’m told. Everyone I’ve ever known who mentions it has wonderful things to say about it, including the person who helped me recognize my cancer symptoms for what they were and get me into diagnosis and treatment rapidly.

During the initial interview they made the mistake of saying something about returning me to health. I said, “I’m sorry, but you can’t do that.” They were, needless to say, taken aback.

I said, “My cancer treatments have, we think, cured me of the cancer. They have not, however, returned me to health. And neither can you. My cancer treatments have made sure that I will never again enjoy the health status that I once enjoyed before I got cancer. Unless you can re-grow a breast for me, replace my missing axillary lymph nodes, and heal the 20% of my right lung that is scarred and useless now, you cannot return me to the health status that I used to have. You can help me do other things to enhance my health, but I will never have my old health status again. That’s gone and it’s never coming back and there’s nothing you or I or anyone else can do about it.”

A few days later I was participating in a graduate student’s study on exercise physiology in women who have been treated for breast cancer. Her assistant was a young man that I first met at Get Real & Heel. We were chatting and he made the comment about what I’d like to get from participating in the GR&H program. I said, “I want you to help me not get lymphedema.”

He said, “Well, we can’t do that. Some things just happen.”

I bristled. Calmly and politely but pointedly, I told him, “No. That’s not right. The cancer just happened. It was an act of God. It happened. But the fact that I have no lymph nodes in my right axilla––that didn’t ‘just happen.’ That was done to me. Someone did that to me. Granted, it had to be done if I was to have a chance of living. Barbaric though it is, it had to be done. But it didn’t ‘just happen.’ Someone did this.”

He kind of looked shocked and stammered and stuttered a bit.

I smiled and said, “I’m looking forward to participating in GR&H. I’ve heard such great things about it. And one of the things I want is for you all to help me not get lymphedema.”

He just mumbled something.

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I was asked to participate in a film project being sponsored by the Centers for Disease Control. The subject is blood clotting disorders, and I was referred for this project by my hematologist, who was very impressed with me because I caught my own deep vein thrombosis (DVT) early-on in the course of having cancer and chemo. He thinks this kind of patient awareness and self-advocacy is great.

The film crew came to Chapel Hill on March 30th and interviewed me, then took some shots of me doing exercises. Action shots, you know. Much more interesting than talking heads! I got a T-shirt from the Get Real & Heel program, which I wore for the action shots. I hope they get included in the final video!

The film crew made a comment that I found very odd. They said that my voice was so calming, it made all the tension drain out of them. They said it had a Zen-like quality to it.

Me?! Zen-like?

I thought that they must really mean that I was boring and dull, as a speaker. But then I figured that if they thought that, they would probably have been too polite to mention it at all, much less mention it several times.

Pretty curious, no? I’ll bet the young man from GR&H didn’t think I was very calm and Zen-like! :)

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As part of my getting ready to participate in the GR&H program, they took some baseline measures of my heart rate. I was supposed to sit quietly and think pleasant thoughts for the first part, then think of something that made me stressed, for the second part. I thought of how I had heard nothing for three months about the report that Patient Relations made when they came to talk to me the day after my surgery, even though I’d asked Patient Relations repeatedly and, most recently, sent a polite request to Mr. I, the cancer hospital administrator, asking if he could nudge Patient Relations into answering me.

I’d recently been checking, once again, on the results of my latest efforts to get a copy of that report and find out with whom it had been shared and what the results of that sharing were. I had asked Louise, my patient advocate, what I could do to get this info, and after checking around she said that I was on the right track, just keep asking.

But this direction by the GR&H folks to think about the whole situation actively plunged me back into a dark, dark place. I left the GR&H offices in tears and very upset, so I decided to do something constructive about it.

I pulled myself together and left a voice mail for Judy, who I thought was a patient advocate. She was the person who helped me move forward with getting my diagnosis at a time when I was preparing to walk away from it because I refused to have a mammogram and the breast clinic was dead-set on giving me one whether I wanted it or not. When Judy got back in touch with me, she let me know that she couldn’t help me, that this was not her job, and that she had helped me at the beginning of my cancer journey as a favor to my friend Cathy (who had asked her to do so) and because she liked me. I was quite taken aback. She suggested that if I had written a letter to Mr. I, I could follow up with him via telephone. I thanked her for her help back at the beginning, saying that without it I would not have been able to move forward. And I hung up.

I took her advice. I called Mr. I and managed to find him at his desk and unoccupied. He said that he had just checked that morning (?!) with Patient Relations and found that they do not share these reports with patients.

I said, “So really it was just an opportunity for the patient to vent and for the hospital to check out its potential legal liability?”

He said no, that they use these reports internally to spot problem areas with personnel or with procedures, so that they can fix the problems.

I said, “Then that’s another problem. The fact that patients who make these reports are prevented from knowing what happened as a result of their doing so.”

He asked me twice what he could do to help me, and I finally said I’d like to know if Dr. N, my surgeon, had ever seen the report and what her reaction was. He said he’d ask.

I wrote all this up and sent it to Mary, the hospital chaplain who had first put me in touch with Mr. I when I went to her office that day late in January and had a minor break-down over having to confront my radiation oncologist about an unsuitable radiation treatment plan. I said that this is what had happened, and I wondered if I could talk with her sometime.

Mary wrote back to say that Mr. I had asked me twice what he could do for me because they are all instructed to ask that, to make sure that the hospital is responsive to patient needs. She indicated that she cannot talk to me about the patient relations report and I should not ask her about it any more because it’s out of scope for what she does. But if I had questions of a spiritual or social/psychological nature, she would be happy to see me.

I wrote back to say that I had been wanting to talk to her about whether she would stand beside me if I decided to confront Dr. N personally about what she did during my surgery. I had been wanting to talk to her about how I might spend time, in the next years, trying to change the system so that patients have an easier time of it than I have had. And I have been putting off having a discussion with her about health care directives (like THOSE are any good, if a signed consent form isn’t any good!). And I asked if these would be appropriate topics of conversation.

I haven’t heard back from her.

It took me several days to get out of the dark place that all of this thrust me into.

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A few days after this I had a dream. In the dream, the nurses at the cancer hospital had made Easter baskets for all of the patients. You remember when the teachers in grade school would print patterns on colored construction paper, and you’d cut them out and fold them and put them together to make things, like baskets?

Well, that’s what the nurses had done. And each pattern was printed with a patient’s name. They had cut out all of the pieces of construction paper and folded them all to make Easter baskets and then put little goodies in the baskets for the patients, and they were giving them out.

Except for me. My piece of construction paper remained uncut, unfolded, and not filled with goodies.

Clearly, I am feeling very bad for being a bad patient. For not “making nice” all the time. Which causes me to be rejected by my caregivers.

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As I have entered the “survivorship” phase of my cancer experience, I find that I cannot move forward and think about what comes next, without first taking stock of what just happened to me. And instead of looking back and seeing my cancer experience as an experience of healing, I can only look back and see it as an experience of physical healing (apparently a big success) combined with events that exacerbated the existing injuries to my psyche and soul, rather than helping to heal them (making the experience a profound failure).

And I am so disappointed, it makes me cry. I had thought that this would be about learning to trust, to be able to find comfort and rest in the arms of my physicians, who would care for me as I would care for myself. I thought that’s what being a “survivor” would take from me, as I faced this cancer battle. I thought being a survivor was about learning to implicitly and completely trust the people who were promising to help you survive.

Instead, it was about *not* being able to repose and relax in my physicians’ care, but always having to look out for myself, to research options for myself, to advocate for what I wanted all the time, to speak up, to speak out, to watch my own back, to make sure that I got the care I was promised (if possible).

It was about trying over and over again to get them to see how I would care for myself–– what my values and priorities were––so that I *could* relax…and feeling that they never got it. So I had to always be on guard. Always wary. Always protective. Always fighting for an option; an alternative; a voice; a vote; information; more information; genuine and heartfelt (not just superficial) acknowledgement and validation.

Always, always, always longing for them to sit with me in the grief and outrage I felt NOT at having cancer, per se, but at what having cancer meant in terms of what I was being asked to do to my body. Always feeling that they didn’t know how to sit with me in that grief. That outrage. They couldn’t come anywhere close to understanding and appreciating that. They only knew how to make clucking noises, shake their heads, and encourage me to join them in Happy Cancer Land.

It makes me sick at heart. I am so disappointed. So sad. So defeated.

As I begin reflecting on what just happened, these are the things that keep coming to the forefront for me. Whatever being a “survivor” really means, it sure didn’t shape up like I thought it was going to. I don’t feel like a survivor. I feel like a failure. It was a battle all the way, not a sinking into anything in which I could find care and comfort…and salvation in its truest, deepest sense.

I am a failure, because I am not––and apparently cannot be––a “good patient.” I ask too many questions. I don’t trust. I am too confrontative. I don’t trust.

I am a failure, because I cannot find it in my heart to be purely grateful for the chance to live. Instead, I mix my gratefulness with a large, large dose of dismay and horror and revulsion at the things I had to allow them to do to me in order to get this chance.

I am a failure, because I wanted so badly for them to understand me, to feel that they totally got where I was coming from, what I needed, saw the value in those things, and demonstrated in their subsequent actions that they saw the value. I shouldn’t have wanted that from them then, and I shouldn’t be so sad at not having gotten it, now. I should just be able to move on.

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A friend of mine from the IBC listserv just wrote to tell me that she hit a “coping wall” recently, about two years out from her original diagnosis and treatment. Part of the wall was realizing just how close she had come to death. Part of it was facing up to “the ghastly barbaric treatments that I had endured.”

Another friend from the listserv just wrote about her experience with IBC cancer treatment as having made her feel like “a body that was just chopped apart, burned, full of toxic drugs and probably glows at night.”

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The husband of a friend of mine had been undergoing treatments for cancer. He died a couple of weekends ago. When a mutual friend told me about it, she burst into tears and said, “I didn’t want to say this to you, but I just found out and I’m so upset. You’re going to hear it anyway. He didn’t die of the cancer; he died from the cancer treatments. His wife told me several weeks ago that they really regretted having done all of this. He never felt sick because of the cancer, but his cancer treatments just did him in. It was terrible for him.”

“I know,” I replied. “I know cancer treatments kill. Why do you think I’ve been in such a state all this time because of my own treatments? Cancer treatment is dangerous. Both at the time you’re taking them and in the future, if you’re lucky enough to have one.”

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I once asked Dr. H what his response was when patients died and their families made it clear that they thought the cancer treatments were responsible, not the cancer itself. He said he just chalked it up to their being unable to accept the cancer and that it was obviously far enough advanced that the patient had not had a good chance of surviving, anyway. It was the cancer, not the cancer treatments, that caused their loved one’s demise, he said.

Sometimes I think that the gulf of understanding that separates oncologists and their patients is unbridgeable.

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I guess, when it comes right down to it, my problem with what happened during my treatment was that the whole thing was a grief interrupted. When I was diagnosed, I immediately began to fight against and then to grieve what I was going to be losing because of the cancer treatments that were necessitated by the cancer. My physicians couldn’t meet me––meet me *all* the way––in that grief.

They could understand grieving the cancer itself…and they could send me to the psychiatrist to help with that (preferably with drugs, if they’d had their way).

But my physicians could not understand my intense and profound grief over the cancer treatments––treatments that they were going to administer to me. They could not understand my grief over what they were going to do to my body and my life. And they could not meet me there and sit with me, even for a while. They could only stay in Happy Cancer Land, where they live every day, and hope I’d join them there.

So within a community of people who were supremely important to me at this critical time, a group of people that I was relying upon to do this very intimate thing for me––save my life––it seemed, over and over again, as if my grief went unrecognized. I was, instead, just “a difficult patient.” And I felt so alone in a dark and dangerous place.

Which became a second source of grief. And mounting anxiety.

I so desperately needed them to be able to mourn with me. To sit with me while I mourned. To honor my mourning for its truth. And then to gently help me move on. And they couldn’t do it. They were prepared to try to get me to Happy Cancer Land with them, as quickly as possible, but they couldn’t sit with me where I was and just honor that.

Except for the medical student, Sunny, who cried with me. Because she felt my lack of trust as poignantly as I did, though from the other side of the “trust” gulf. But judging from her reaction to me later, when our paths crossed, she was profoundly embarrassed at her behavior.

Too bad. It was one of the most comforting and humane things that happened to me at the hands of a physician (or almost-physician) during the whole nine months.

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Shortly after I was diagnosed last year, I got the intuition that I would have two “healing crises” in the course of dealing with this cancer and that if I passed both of those crises, I’d live for a long time afterward. But if not, I’d die fairly soon from this. As if the crises that would come would be life-death doorways through which I could choose to step, or refrain from stepping, though this did not necessarily mean that the choice would be one I made with my conscious mind. It would be something I did on a deeper level of consciousness.

That, too, did not happen as I expected. I had some very uncomfortable and unpleasant moments, but nothing that came very close to physical death.

Perhaps I was just wrong. Intuitions can be like that. You may get them, but misunderstand them. Or even the “getting” of them can be wrong.

I have tended to find, though, that my intuitions are usually correct, in the end. I had a strong, compelling intuition in the spring of 2009 that something really big was about to happen to me and I needed to re-finance my mortgage in order to get my payments down as low as possible—to be prepared for this impending something.

And I was right. I had no idea it would be cancer. I just thought I’d wind up getting laid off, because that’s what was in the air at the University where I worked. Turns out, I was only partly right. I was laid off. But not before I got cancer, which was totally unexpected.

So if that intuition was right, maybe my “two healing crises” intuition was right, too, and I’m just not seeing it yet?

Maybe it means that this brush with cancer was “Healing Crisis One” (which I have passed) and I’m going to get a recurrence of the cancer, which will be “Healing Crisis Two”?

If this is the case, then I am afraid. I am afraid not just because of the fact that getting a recurrence would be a bad thing in and of itself, but because it means I’d be thrust back into active cancer treatment. It’s not the cancer that scares me as much as it is the cancer treatment experience.

I’d have to go through all of this again––the doctors who walk into the treatment room with their minds already made up about what I am going to do before they’ve even talked to me about it, the struggle to find out if there are alternatives to the treatments that are being set before me as my fated course of action if I want to try to live, the struggle to thoroughly understand and come to accept the costs of the treatments (what I will irrevocably lose) as well as the risks of the treatments (what I may or may not lose either now or in the future), the struggle to figure out how to mitigate the worst of the treatment risks, the need for constant vigilance in order to make sure that what the doctors and I finally agree will happen does indeed happen as we discussed….

These things have been 75% of my cancer battle (the physical battle to survive being the other 25%), and the prospect of having to go through them again fills me with dread.

Or maybe my two-healing-crisis intuition means that “Healing Crisis One” has been the physical healing of my body, while “Healing Crisis Two” was the healing of my psyche and soul? If this is the case, then I can say with confidence that I have come through the first healing crisis just fine. The second crisis, however, has not yet begun to be resolved.

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I have begun reading a book titled The Biological Basis of Cancer, which is used as a textbook in advanced undergrad or lower-level graduate classes on the biology of cancer.

So this is the enemy? When I read it, I find my anxious heart growing quiet and fascination taking over. It’s very interesting to come to understand this thing as my doctors were trained to understand it––as a disease process.

There is a kind of wonder at what goes wrong in the body to produce a cancer, and how it affects the body once it’s begun, and where the vulnerable places are in the cancer and how you might exploit those vulnerabilities in order to defeat it. And how that translates into the (brutal and barbaric, but more effective than ever before) cancer treatments we have today. I got the same feelings of peace and wonder when Sunny talked to me about how she learned to intubate patients, when Dr. L and Cailyn talked to me about how radiation works, and when my friend J-Rad would teach me things about cancer and cancer treatment.

If I could approach cancer *only* from this perspective, it would be very helpful.

Unfortunately, I have always had to approach it more as a whole-life event, not just a disease process. And that has made a world of difference in how I’ve traveled through this experience.

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I have been very, very, very tired, since my treatments ended. Still, I try to keep active. I have appointments to go to, and mountains of work inside and outside the house to try to bring under control. I’ve been tackling the paperwork that has gone undone for far too long. I’ve been working in my yard, planting flowers here and there, wearing my compression sleeve like a good little worker. But as it gets hotter, I can see that sucker getting ripped off! I still need to mow my yard, but my riding mower isn’t starting and I’m not sure I’ve figured out the problem, yet.

The trees have leafed out now and you can no longer see the road from my house. (Which means that from the road you can’t see the uncut grass!) The daffodils have bloomed and faded, the azaleas are in full flower, irises and gladiolas will soon be here. I bought two lantanas and planted them near my unicorn statue. And I have a bright red begonia in a rock-shaped planter on my porch.

I tried to re-pot a tall, rangy jade plant that used to be in my kitchen windowsill, but I butchered the poor thing instead. I was feeling pretty sorry about that, but now I’m noticing that little shoots of leaves are starting to sprout from what I had thought were just ugly, useless stalks. Maybe there’s a lesson for me, there?

The birds have left the feeders. I’m not sure why. Last year I was able to attract a colorful little set of birdies to the feeder outside the window next to my rocking chair. I hope they return eventually this year. It’s not time for hummers yet, but it will be soon. I have wildflower seed to plant in my garden, hoping that it will attract them but not sure how fair that is. I have two cats who go outdoors, after all…..

Bellah, my 14-year-old Border collie mix, is loving the heat and sun. She is getting old, deaf and blind, so when she sleeps, she sleeps *soundly*! Rousing her can be a real challenge! But she’s kept active and on the go to some extent by Foster, my 3-year-old Sheltie mix, who eggs her on (and sometimes just p*sses her off!).

Foster is loving the warmer days, too, though they must get a lot warmer for him to really feel comfy since he doesn’t have a thick undercoat like Bellah does. What he lacks in fur, though, he makes up for in heat generation through energy expenditure. He goes running around my property, chasing after what I suspect are imaginary threats to our well-being. When he’s chasing prey that I can see, I notice that he runs in a dead heat to get them. But at other times, he runs out the door, yipping excitedly and dashing off into the woods kind of like Tigger––step, step, step, jump, step, step, step, jump….! Like a springbok. I think that at these times he invents imaginary dangers to chase simply to get Bellah to run with him. :) But the truth is, he’s just running and jumping for the sheer joy of running and jumping.

Which is not a bad way to spend a few hours on a warm, sunny Carolina afternoon in April.