1-25-10 – Trials (Clinical and Otherwise…)

Well, here we are, two more weeks down the road. It’s been a busy time…not least of all for my hair follicles.

The hair on my head is growing rapidly. I now have enough that when I take off one of my protect-my-bald-head hats, the rim of the hat has left a little line in my hair that you can see. When I rub my head, now, there is a definite “with the grain” and “against the grain” feel. Even the little bald-ish spots in the front appear to be filling in. (Whew!)

In fact, it’s as if the hair follicles all over my body are in overdrive, now. Making up for lost time, I guess! I am back to having to shave my legs again. Unlike before I got sick, when menopause had taken me down to needing about two shavings a week, I seem to be back up to every other day. I no sooner shave a hair off than it comes back and seems to bring a friend with it for moral support and encouragement!

If this is an irritating reversion to my youth, when it comes to my legs, it’s the opposite when it comes to my face, where the same wild dance of the follicles seems to be manifesting as a progression to old age hirsuteness, instead. My post-menopausal two or three hairs on my chin and upper lip have returned in all their dark, bristly beauty (not!). When I went to take them off a couple of days ago, and I looked closely in the mirror, I realized to my horror that the very, very tiny, peach-fuzzy hairs that all women have on their faces were also growing like crazy. They were very thin and very light colored, but I realized that given how long they had gotten, already, and at the rate the hair everywhere else was growing, it was only a matter of time before I would be able to join ZZ Top. So I did what any self-respecting post-menopausal woman would do: I grabbed my personal groomer and groomed.

I know why I’m getting this uncharacteristic hair growth on my face. It’s because my estrogen levels have fallen since chemo. Menopause had (more or less) gently lowered me into a decreased hormonal status, already. Then chemo killed what was left of my ovarian function. And I’m not even making much estradiol, an estrogen precursor, any more, because it’s produced very actively by fat cells—and I’ve lost 50 lbs. since my diagnosis. Put it all together, and my body is relatively estrogen starved, with all of the physical side effects that tends to produce in women.

This being the case, I have begun to marvel at the plan to put me on aromatase inhibitors for fives years after I finish radiation treatments. AIs interrupt the body’s production of estrogen out of estradiol. Since I have had an estrogen-positive cancer, one strategy for preventing its recurrence is to deprive it of the estrogen-rich environment that was feeding it…hence the AIs. Apparently the goal is to wring every last drop of estrogen out of me. At this rate, I wouldn’t be surprised if my dead little ovaries dropped down and I wound up growing myself a pair! :)

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If my hair follicles have been waking up and running riot throughout my body, the thought has crossed my mind whether lingering stray cancer cells might not be doing the same thing. I mean, it was chemo that got rid of the hair, right? And the cancer at the same time, right? And I’m almost three months past chemo and two months past surgery…with no other kind of cancer treatment. I’m so far past chemo that my body is waking up and beginning to remember what it was, right? And what it was, was a body with a very dangerous form of cancer growing inside it.

Granted, I’ve had treatment. Very successfully, so far. But we can’t be 100% sure that we got all of the rogue cells that were certainly circulating in my body and looking for a place to homestead and grow. So if my hair follicles are now waking up, are the few remaining chemo-abused cancer cells doing the same thing? If they are, then I’m in trouble, because any cancer cells that remain by now will be the hardiest ones—the ones that were able to survive the chemo onslaught.

But then I tell myself, “No. If you have so little estrogen left in your system, this cancer is not likely to find a hospitable environment in which to grow, because it was an estrogen-positive cancer that thrived in an estrogen-rich environment. You’re as safe as you can be, at this point in time.”

And that makes me feel pretty good.

Until I stop to realize that sometimes—not always, but sometimes—the chemo can cause the “signature” of the cancer to change. It can flip from being estrogen-receptor positive, to being estrogen-receptor negative. Meaning that the presence or absence of estrogen in my system would then be meaningless. Hormone negative cancers are more difficult to treat for precisely that reason: manipulating the body’s hormone status is irrelevant to their spread and growth.

I don’t lie awake at night worrying about the cancer flipping and coming back in a form that can’t be controlled by manipulating my hormones. But it is something to be aware of. It helps to prevent over-confidence, I guess.

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Post-chemo sequellae continue to surprise me. After more than two months of not being very noticeable, I have realized that the symptoms of Hand-Foot Syndrome remain with me. They are very mild, but they are still there—a low-level tingling in the soles of my feet and the palms of my hands. I wonder if it will ever go away or if this is a permanent side-effect?

And if it’s permanent at this level, now, I wonder what it might have been like if I’d followed my first health care team’s advice and only used Tylenol (however useless that was) to try to control the pain rather than doing what I did, which was to take nutritional measures to try to relieve the *cause* of the pain?

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I went to a yoga class for breast cancer survivors. The instructor had us lying on the floor, which was very hard. It hurt my tailbone. She told us to feel the floor beneath us. Then she said we should note the sensations we were experiencing. The thought that flashed through my head, when she said that, was that the floor felt hard and unyielding, just like my chest now. I began to cry, and once it started, I couldn’t stop.

Just another mark of modern cancer treatment, written in my flesh.

I may have been extra sensitive that day because I was packing up the last of the things in my office and moving out. As you will recall, the folks who have been running my department since last February 17th have laid off me and six of my co-workers. I can do without the work (kind of), but how am I going to survive without the income?

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Yes, January 15th was my last day at work. I am now officially laid off. If my old boss were still there and if our program’s director had not been systematically stripped of all real power by the interlopers (though he remains, at least in title, the director), this would never have happened to me. TEACCH has about 175 employees state-wide. If I had been the worst employee on the list, the least productive, the least useful—they still would never have gotten rid of me while I was in the middle of fighting for my life. TEACCH doesn’t do that.

TEACCH is, if nothing else, about people. It’s first and foremost about our clients with autism (I guess it’s “their” clients, now, not “our”) and their families. It’s about helping families achieve the results that they want for their children with autism and that adults with autism want for themselves—in ways that feel right and good to the individuals concerned.

But secondarily it’s about its employees. TEACCH sticks by you. It doesn’t kick you out and leave you without. I’ve seen this kind of loyalty toward employees happen, in years gone by, with others who have gotten cancer or had strokes. But now when I need TEACCH to stick by me, the program can’t—though our director certainly tried to change that.

Why was he unsuccessful? Because our program has been taken over by the Carolina Institute for Developmental Disabilities, a new umbrella organization at UNC, and the CIDD operates under an entirely different philosophy of operation than the one that has driven TEACCH for four decades.

Early-on after the take-over a CIDD official was talking to one of my co-workers and proposing something that the co-worker knew would not be well received by TEACCH parents. “Who cares what the parents want?” responded the official. Unfortunately, that attitude does seem to be endemic to the CIDD.

Recently a parent confided to me that they had needed help on a behavioral issue with their autistic child and had turned to TEACCH, as usual, for that. Somehow someone from the CIDD got put “in charge” of the response, and it was totally inappropriate. Not at all what the parent had wanted for the child, and not at all what they had come to expect from TEACCH.

“The CIDD just doesn’t get it!” the parent exclaimed to me. “They don’t have a clue!”

And then the larger picture emerged.

“I’m afraid for the future, now,” they told me. “I’m afraid that without the old TEACCH, the way it used to be, my child is at risk. I have always known that I need to make plans for what will happen with my child when the day comes that I’m no longer here. But I had always been comforted to know that I could count on TEACCH to intervene after I’m gone, if necessary, to make sure that my child will have the kind of life that she and I both want for her. Now I’m afraid that she will just be drugged and institutionalized, instead.”

Another parent has told me that the director of the CIDD has made disparaging comments about TEACCH’s residential-vocational program that’s situated on about 80 acres of land. He apparently thinks that the agricultural vocational focus of the program, and thus the setting on the 80 acres, is a waste of valuable resources. That much land, he suggested to my informant, should be housing a lot more people with autism. My informant suggested that the effect of what he was saying was “warehousing”…not “housing.”

As I said, the CIDD seems to operate under an entirely different philosophy than the one TEACCH has operated under for the last 40 years. Small wonder that they would show no loyalty to a mere employee fighting for her life.

Meanwhile, they have let another co-worker know that saying anything negative about the CIDD or its leadership is not allowed and that such disloyalty from employees will be met with disciplinary action.

And the coup de grâce — At a mandatory meeting held the day after we were all dismissed, the remaining employees in our old division of TEACCH were told that our presence there for the months since we were informed about our impending layoff had produced a negative, toxic environment, but that things would be much better at the “New TEACCH” now that we are all gone.

During the last week of my employment, I felt like I was handling things pretty well. I was sad. Very sad. But there’s just so much other stuff going on in my life right now, with my health issues and all, that the loss of my job seemed to be having less emotional impact on me than I would have thought it would. But in the week since then, almost every night I dream about TEACCH and being laid off and what is happening there. I invariably wake up really angry.

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So now I’m going to be living (or trying to live) on 50% of my customary income. I don’t know how anyone can do that. So I’ve begun searching around for other sources of help. Food stamps. Medicaid. Mortgage assistance…. Kind of embarrassing, but you do what you have to do. Unfortunately, I won’t qualify for some of these. Food stamps, for instance, is going to be dicey. Medicaid might or might not come through. I have yet to chase down the details on the mortgage assistance thing.

One of the pressing needs I will have is assistance with the insurance co-pays for my prescription drugs. (I will retain my State Health Plan insurance, COBRA-free, for a year as part of my severance package.) The $10 co-pays I can handle, I guess (though on 50% income, even that will be daunting). But one of the co-pays is $100 a month. There’s no way I can do that.

I decided to call the pharmaceutical company that manufactures this drug and see if their access to care program could help me. Turns out that they cannot help me, because I have insurance. If I had no insurance, they would send me the drug for free every month. But since I do have it, they won’t. They could be collecting a sale free from my insurance company for the largest part of the cost of the drug and then writing off my $100 share of the cost…but that they will not do. They would outright *give* me this expensive drug…but not give me $100 a month to help me get it.

There are a number of organizations out there designed to help cancer patients with financial problems such as these. Some of them won’t help with co-pays. The ones that will help with co-pays will only do so for drugs that are the primary cancer treatment drugs—not drugs that are given to offset the side effects of cancer treatment. So, for instance, they won’t pay for anti-nausea med while you’re on chemo…only for the chemo itself. And they won’t pay for an expensive blood thinner to manage a clotting disorder that you got because you got cancer and took chemo. That’s another “side effect” issue.

I have called ten of these organizations, to date. What I finally figured out that there is plenty of support from these kinds of agencies if you’re a 7 foot tall pygmy with one green eye and one blue eye, living in the tropical jungles of the Antarctic.

The good news is, I found one organization that may help me get the aromatase inhibitor I need to take for the next five years. I’m filling out their application now. Doesn’t help me with the blood thinner I need to take to prevent having a stroke or a heart attack—but it’s good to have a resource (I hope!) to meet the upcoming Femara expense.

(Late-breaking news! I may have found help with the Lovenox, too. We’ll see what happens when I fill out an application….)

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On the same day that I was laid off, I had my first real treatment appointment with Dr. J, my radiation oncologist. We talked about the wide discrepancy between my surgeon’s judgment in taking all three levels of my lymph nodes and the final pathology report saying that only 4 out of 22 nodes showed any signs of having had cancer in them, and that none of them did after chemo. I emphasized that I did not want any more lymphedema risk, so I was saying “no” to exposing my axilla to any more radiation, whether deliberate or in the form of scatter from beams directed to other locations on my body.

She was totally in agreement with me. In fact, she walked into the room saying that she didn’t think we’d need to radiate them at all. She also said that she wouldn’t radiate above the clavicle (collarbone), either, since radiating the nodes there would somewhat increase my risk of lymphedema. I asked her if she’d prefer to radiate them, and she said yes, but that she didn’t feel we have to.

Then I asked her again about the “rind” of lung that she has mentioned in the past. Although it would be “less than 10%,” I was still concerned that destroying that piece of lung could cause me to become permanently (or even temporarily!) short of breath. She assured me that this almost never happens, and that she has only caused radiation pneumonitis once in her career. It really is a non-issue.

She said that we would radiate the internal mammary nodes, along the sternum, and I agreed with her. My lymphedema therapist says that 25% of the breast lymphatics drain into those nodes, so it’s likely that some microscopic disease got into them, and we need to treat them now to try to eradicate whatever the chemo may have missed.

And of course we would radiate the chest wall.

She talked about using a mixture of electrons and photons in my treatment, leading me to assume that normally she used all of one or the other. I’m not sure which.

I asked her if she thought I was at increased risk because it’s been 2½ months since I finished chemo and 1½ months since surgery, and I was only just now getting in to see her. She agreed that it seemed like a long time and asked me why I hadn’t been in sooner. I said it was because no one thought to make an appointment for me before my surgery, and that I had been the one to ask about it when I talked to my new oncologist in December. When they finally tried to set the appointment, January 15th was the first date that was available. Dr. J had been out of the clinic for the entire month of December, so everyone who needed to see her was bunched up as soon after the first of the month in January as they could get.

She just shrugged and said that it was probably just as well that I hadn’t tried to get in earlier, because for the first couple of weeks that she was back, it was insane for her to try to get caught up. “You’re probably getting me at a better place, now,” she said. But I noticed that she never did answer my question about the delay in resuming my active treatment and how much increased risk I was taking on because of that.

At the end of our visit, I told her that I have only one firm line. I will not give permission for my axilla to be hit with radiation either deliberately or as scatter. But for the rest, I’m fine with her doing whatever she wants, however she thinks it needs to be done.

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Then they took me to simulation, where I got what are probably the only tattoos I’ll ever have in my life. They laid me down on a very narrow and hard table and asked me to raise my right arm over my head and hold onto a bar, in order to expose the right chest area, my mastectomy scar, and my underarm area. (I was gratified to be able to do this. All those weeks of doing my exercises every day paid off!)

Then they slid the table into a very large donut-shaped ring and whirring sounds ensued while the technicians disappeared behind a shielded area. When they emerged again, they pulled me out and began making cross-hair marks on my chest—obviously the targets for the treatment beams. Having inked me up, they took some kind of sharp instrument to drive the ink at the cross-hair intersections deep down into my skin. The cross-hairs eventually washed away in the shower, but I’m told that the ink dots will be with me for the rest of my life.

I was surprised that I didn’t have to get a special treatment form made or anything like that, but I was told that because my case was “simple,” that would not be necessary. So although I had gone prepared for a long, long stay at the hospital while I went through simulation, it took much less time than I’d imagined.

I was sent home with a return date of January 25th—a week and a half later. Dr. J had wanted to see me four or five days later, but once again the schedule was full, so the first they could see me to complete the process of getting me ready for treatment was 10 days later. And treatment wouldn’t start until the day after that.

More delays.

Still, I felt good. It was surprisingly good to be back in active treatment. That feeling of “free-fall” that goes with being out of the treatment loop can begin to get unsettling—especially when you know that there is more treatment you need to be getting.

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As I was going home from my appointment with my rad onc, I got a call from a nurse practitioner who is managing a research trial that I might be interested in joining. The trial is part of a nation-wide study that is trying to determine whether an IV form of a class of drugs called bisphosphonates will be better at helping prevent the recurrence and metastasis of breast cancer than an oral form of the drugs—and what the side effects are of taking these two forms, at these doses, for as long as the study will run.

Bisphophonates are bone-building drugs, like Boniva or Fosamax or Reclast. They are used by people who have osteoporosis to try to build up their weakened bones. Apparently some years ago they noticed that people who are on bisphos for osteoporosis have a statistically significant lower risk of getting cancer. They also noticed that people being treated for osteoporosis who also were being treated for cancer tended to have fewer recurrences and less metastasis—again, at a statistically significant level.

At some point oncologists began using bisphos to *treat* cancers that appear (as a primary cancer or as a recurrence of another kind of cancer) in the bones. That use of the drug is FDA approved, because it involves pharmaceutical intervention in a disease process that is already taking place in the bones. But the FDA does not approve its use for the *prevention* of recurrence in or metastasis to bones that are, so far, healthy and unaffected by cancer.

The trouble is, when breast cancer recurs, if it’s outside the region of the breast, it tends to go to the liver, the lungs, or the bone. So just as AIs can be useful in preventing recurrence/metastasis of estrogen-positive breast cancer because it makes the internal environment of the body inhospitable to the cancer, so bisphos might be useful in preventing recurrence/metastasis to the bones by making them an inhospitable place for recurrence to happen. I think it has some protective effect on the soft tissues, as well, based upon a comment in one of the articles I read that said this effect needs to be studied.

The trial that I have been invited to join will last for three years. A computer would randomly choose which form of the drug I would take. While I was on the study, I would have very thorough check-ups every three months during the trial and yearly after it is finished—both a clinical visit with the project nurse to talk about how I’m doing and a good set of blood labs. This kind of surveillance will take place for the next 10 years…or until I die.

So far, so good, right? Taking bisphos can reduce the risk of recurrence by 25%-30%. This is very good. And participating in the trial would give me instant access to a level of follow-up during the surveillance period after I finish active treatment that I find most attractive. Instead of having to ask my new oncologist for that high a level of active surveillance, I could get it handed to me. No fuss. No “issues” to process with my care providers. I could just slip quietly into a very favorable surveillance pattern.

However, there are various side effects of taking these kinds of drugs. Most of them are reasonably minor and easily handled. I must admit that the “shortness of breath” side effect that is listed as one of the “likely” ones in the study’s consent form is not very reassuring to me. I already have reactive airways and off-and-on problems with shortness of breath. I really hate the thought of making that worse.

One side effect, however, is not minor and easily handled. It’s called ONJ, or osteonecrosis (death of the bone) of the jaw. From what I understand, it’s very painful and “nasty” if you get it. ONJ can occur spontaneously in people, but it is exceedingly, exceedingly rare. It is a bit less rare among people with osteoporosis who have been taking (or have ever taken) a bisphos. It is noticeably less rare among people who have had cancer and been given chemo or radiation and have also taken a bisphos. Or among those who have a blood clotting disorder (like I have) and have taken a bisphos.

But your risk for getting ONJ is not confined to your personal characteristics (cancer patient, clotting disorder…). It’s also determined by the amount of the drug you get, how long you take it, and what form you take it in. I would be able to control none of these variables if I participate in this study. I would be randomly assigned to the IV or oral arms of the study. The amounts given to cancer patients when it’s used for treatment are far in excess of what is given to osteoporosis patients. The amounts that would be given to me in this study are similarly large. And I would take these amounts for the next three years.

The IV form is the worst for putting you at risk for ONJ. According to the American Dental Association, more than 90% of all ONJ cases (from patients with all kinds of health backgrounds) are linked to use of the IV form of the drugs. Although there are no really good studies on the incidence of ONJ in cancer patients receiving bisphos, current evidence suggests that from .34% to 20% of cancer patients who have received the IV form get ONJ. Information from the American Association of Oral and Maxillofacial Surgeons says that the incidence is more like .8% to 12%.

Clearly, no one really knows for sure. That’s one of the things this clinical trial will be trying to nail down—what and how bad the risks are in taking these drugs at these levels. The study nurse told me, in response to my query, that so far this study has not had any incidence of ONJ among participants, and according to the National Cancer Institute website, the study has been running since 2005. That seemed reassuring.

But then I found the contact info for the nationwide study coordinator, so I asked her the same question directly, myself. She said that they have had 10 cases reported so far (she will not tell me whether among the IV or the oral arms of the study). The study will recruit a total of 5400 patients, and it’s about to close recruitment. Assuming that only 4000 patients have been on the study for enough time to develop ONJ symptoms (median time to onset is 22 months), that’s an incidence of .25% among all arms. If only 3000 patients have been on the study for long enough, the incidence is .33%. My guess is that the bulk of that has come from the IV arm, but there’s no way to prove that right now, of course.

Whatever the risk really is, it’s a lifelong risk. Once you’ve taken a bisphos, your risk for ONJ remains even after you’ve quit taking the drug. Like lymphedema after axillary surgery, it’s a risk you assume for life.

If there is a reason why there’s been a low incidence of ONJ so far in this study, it might be because the study is really emphasizing that patients need to practice good dental health. It seems that the two largest risk factors for getting ONJ, according to the AAOMS, are IV bisphos exposure and having an invasive dental procedure involving the bone in the jaw. Osteo patients who have been on bisphos and then have an invasive dental procedure have a 4-fold increase in their risk of getting ONJ. Cancer patients who have been on bisphos and then have an invasive dental procedure increase their risk of getting ONJ by 5 to 21 times. Clearly, there’s something about having both cancer treatment and IV bisphos treatment that puts one at special risk. But if you practice good dental health and do all you can to avoid needing an invasive dental procedure, your chances of not getting ONJ improve—though no one appears to know by how much.

I’ve been exploring whether I would be a good candidate to participate in this study, or whether I have personal risk factors that would make me a poor candidate. There’s the fact that I have a clotting disorder, for starters. But my hematologist says that this shouldn’t be an issue for me.

Then there’s the issue of heredity. My uncle has taken bisphos for osteoporosis and had a bad reaction to it, but he told me that if he were in my shoes, trying to prevent recurrence of a very aggressive cancer, he’d take it. My aunt, an LPN, has periodontal disease and my grandfather had it. It’s in my family. She says if she were me she wouldn’t take it.
Because of this family history, my parents are dead set against my doing it.

My dentist, bless her soul, has been very helpful to me in trying to evaluate the potential risk versus the potential benefit. She got two medical articles from the ADA and the American Association of Oral and Maxillofacial Surgeons for me to read, and she opened her office on Saturday just for me, so that we could talk about the papers and she could examine my teeth and gums and see if there is any sign of trouble, now, that could be exacerbated by taking bisphos. (There’s not.) She’s also arranged for me to have a consultation with an oral surgeon who has not only a DDS degree but an MD as well—someone who is going to be uniquely qualified to understand both the dental risk angle and the medical benefit angle.

Every medical person I’ve asked about this says that the effectiveness of bisphos in significantly reducing the risk of cancer recurrence and metastasis makes it very worth doing. My new onc doc. My rad onc. Dr. M whom I consulted before my surgery. The out-of-state surgeon who told me that there had really been no need to take my lymph nodes. They are all advocates.

Even my nutritionist, an “outside the box” thinker in terms of what health and nutrition really mean, says it would probably be a good idea for me to do this. I have asked him twice, emphasizing the risk of getting ONJ. And still he says that he thinks the risk can be adequately managed with nutritional support and by avoiding needing invasive dental procedures through practicing good oral hygiene.

On the other hand, whenever I mention this question to friends, their reactions are almost always very negative. In fact, it’s almost visceral. They speak with passion about how I would be assuming all of the risk and not even for any financial compensation from the company for doing so. The drug companies, after all, are not really looking out for me. They’re not at all interested in me; they’re only interested in their profits. And they’d be using me as a guinea pig to increase those profits. To add insult to injury, I would have to pay for all of the follow-up clinic visits and the lab work that is done, myself. The only thing I’d get for free out of it would be the drugs, which the companies who are participating would provide gratis. They payoff, they say, is just not great enough, and the risk is too great.

I don’t know whether they’re right. So far, my realistic risk of getting ONJ, even if I’m assigned to the IV arm of the study, is about .25% to .33%. Let’s assume that this figure is wrong and it’s actually ten times more risky than that. That would mean that my risk is 2.5% to 3.3% of getting ONJ.

My risk of having a recurrence of this cancer is 10%-20% over the next ten years, according to my onc doc. My friend J, who is a radiation oncologist, says that he thinks my onc doc is excessively optimistic. I have had a very, very aggressive and dangerous form of cancer, he reminds me. And my statistical risk of having a recurrence is more like 30%-40%. The lower, more optimistic figure is based on my excellent pathology report—it’s a guess based on personal factors, not a statistically derived figure. And the statistics about IBC tell a different story about long-term survival.

Taking a bisphos would reduce that risk by at least 25%. So if my risk of having a recurrence is 20%, it would reduce the risk to 15%. If my risk is really more like 30%, it would reduce it to 22.5%. If my risk is more like 40%, it would reduce it to 30%.

Which would be harder to live with? The risk of getting ONJ if I take bisphosphonates, or the risk of having a recurrence? Could I live comfortably with myself in the years to come if I reject what we know can help reduce my risk of recurrence, all because of a fear of developing a rare side effect? Or would I be more comfortable in the years to come, knowing that I have not filled my body with still more toxic drugs? That I have given it its “best chance” to heal itself naturally, at this point, without having to overcome the burden of so many pharmaceuticals?

Then again, how heavily do I want to rely on my body’s ability to “naturally” heal itself, given that its natural ability to throw off the cellular distortions that are cancer was not too good to start with? It’s what got me into this mess. Granted, I’ve taken several steps to improve its function in that regard. But have I done enough? *Can* I do enough, in the wake of being diagnosed with an aggressive cancer like this? Or do I need outside reinforcements?

My cancer mentor, Ashley, started taking a bisphos last September for her metastatic Stage IV ovarian cancer. The person who suggested she do this is an oncologist who runs a well known and highly regarded integrative oncology practice in Illinois. He is “Mr. Diet and Nutrition” when it comes to cancer treatment, but he’s also a fully trained and licensed oncologist, and he recognizes the value of most conventional treatments.

Ashley firmly believes in participating in clinical trials both for one’s own sake and for the sake of future generations of cancer patients, who may be able to profit from the knowledge gained by clinical trials being run today. After all, the reason we have the treatment options we have today is because of the thousands of people who have come before us in Cancer Land and participated in the clinical trials that led to the treatments we are using. Our participation today is the least we can do for the next generation of cancer patients.

But as she points out, she’s in a different position than I am. She’s got Stage IV cancer and is fighting for her life. I had Stage III cancer and since my surgery it’s been downgraded to a Stage I cancer. I do not have metastatic disease. The risks a person is willing to take, under such different circumstances may be different.

Of course, she’s right. But…

Ashley and I share two traits in common. First, the cancers that we each have/have had are rare and very aggressive. The tumor I had was a Grade 3 tumor—the most aggressive grade. Second, my new onc doc has told me that she thinks I have a 10-20% chance of recurrence in the next 10 years. When Ashley finished treatment for her original cancer, a couple of years ago, she, too, was told that she had only a 10% chance of recurrence. She thought she was home free. But it didn’t take long for the cancer to come back.

So as I told Ashley, no, I am not Stage IV. Yet. And that’s really the best I’ll ever be able to say. Given the nature of IBC, my status as being NED (No Evidence of Disease) could change in a heartbeat. We just don’t know.

In the end, the question of whether or not to take bisphosphonate is just another example of how modern cancer treatment (for breast cancer anyway) does not really so much return you to health as it offers you a set of alternative health issues to deal with for the whatever the rest of your life may be. And the length of that is something that modern cancer treatment cannot yet promise when offering you this “deal.”

“The cancer fairy is a BITCH and worse than that,” wrote one of my correspondents from the IBC listserv. “Our so called remedies to her can cause more harm to our minds, more damage to our bodies—and yet like good little soldiers we are suppose to blindly follow orders and not worry about the casualties of ‘friendly fire.’"

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I recently consulted with my nutritionist to tweak my supplement support program for radiation therapy, taking AIs, and possibly taking bisphos. While waiting to see my therapist today, I began reading his final report to me. About half-way through I began to get those old depressed, panicky feelings that I thought I’d come to terms with several months ago. My God! I have cancer! Cancer!!!! How did this happen? What did I do to make this happen, and how can I make sure that it doesn’t happen again?

Knowing that the answer is, I can’t make sure it doesn’t happen again…that is the scary part. Again. As I face this decision about taking bisphosphonates, it emphasizes to me all over again how out of control I really am. How my life has careened out of my control. How changed it all is.

My throat gets tighter and tears well up in my eyes. I want to sob and sob and sob and never stop. It feels just that hopeless.

The only response I know how to make to all of this, in the end, is to “lean into the sharp points,” as one Zen sage advised. The uncertainty is the “sharp points.” I can pretend that they aren’t there, I can run from them in fear, or I can admit they are there and accept all the places where they prick me, hurt me, and frighten me. And I can lean into them. Embrace the fear and uncertainty. Learn to live with it gracefully, take my best shot at making good decisions, and then accept whatever happens.

Not easy. But do I really have any other choice?

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I went to the final leg of my radiation simulation today. They were taking x-rays of the radiation fields. As I lay on the table and they were moving me about and lining me up, I couldn’t help crying. Here I am again, doing things to my body that I would never voluntarily do under any other circumstances. In fact, that I would normally refuse to do. But here I am. I have cancer. It’s this, or die.

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After the x-rays were taken, I asked the technicians whether we were radiating the axilla. They said yes, they do for all patients. I said, “Not for me!” And it was on.

I was very emphatic that I do not give permission for my axilla to be radiated. That Dr. J and I had agreed on 1-15-10 that this would not happen, and no deliberate or scatter radiation is to hit the region where my axillary nodes were removed. Everything else is at her discretion, but not the axilla. I thought that we had already agreed on this, but I wanted to make sure that they had gotten the message and that we were all on the same page. They finally said I needed to talk to Dr. J, as they just follow her orders. What concerned me was that apparently her orders did not include no axillary radiation.

I will have treatment five days a week for six weeks. I’ll see Dr. J on the Monday of each week, after my treatment is finished. This was a Monday, so after we finished taking the set-up x-rays I was then taken back to see her. But first I saw a medical student who is working with her—at least, I saw him for maybe 60 seconds. He asked me how I was doing. I told him about the resurgence of the old emotional baggage about having cancer at all, the very nasty things I’m being forced to do to my body all for just the *chance* of survival, and the fact that I’m so out of control in my own skin, now, and will be forever more. How difficult this is….

Then I said that my second issue, which had just come up, was a concern about not damaging the axilla any more through radiation exposure. I explained how Dr. N, in her apparently flawed judgment, had taken the Level 3 nodes, but the pathology report turned out not to support her judgment in having done so, and I am now unwilling to put myself at any further risk for lymphedema.

Just then Dr. J came in. She walked in with print-outs of the pictures we had just taken of the radiation fields. A picture really is worth a thousand words.

It turns out that while she is not directing radiation to the axilla via a rear port (or entry point), which she would do if she were deliberately treating them, she was hitting them from the front with radiation as a by-product of hitting the internal mammary nodes with a ray that enters the chest via the side. She wasn’t hitting the axillary area up higher, where the arm and chest wall meet (around where I believe the pectoralis muscle is), but was most definitely hitting it down in the area immediately under the armpit.

I emphasized to her, once again, that I do not want to fry the little lymphatic capillaries that are desperately trying to re-grow themselves in that region. That I thought we had agreed on 1-15-10 that we would not hit that area either deliberately or via scatter. I asked her if that area was not, in fact, an axillary area. She admitted that it is.

She said that instead of her original plan to use 50% electrons and 50% photons in my treatment, she could use all low-energy electrons (to limit their skin penetration) and no photons. This would mean she would treat my chest wall from directly overhead and thus avoid hitting the axillary area at all with that tangential ray of photons.

However, doing it this way opens up more uncertainty about how much the lung is getting penetrated by the radiation. (Apparently electrons are harder to control than photons. You can’t tell as easily how far they are penetrating.) Furthermore, in doing so, it may be difficult to get enough treatment to the internal mammary nodes along the sternum, but we can control that, she said, by doing a separate dose of radiation targeting those nodes, if necessary.

So we discussed how much my lung is going to get fried. I asked her whether the revised radiation plan was going to really increase my hit to the lungs, because developing a lung problem and shortness of breath is also very, very high on my list of things to avoid.

She said that “in court” the answer would be no. But in reality it’s hard to know sometimes how deeply the rays have gone, no matter what dosimetry says. You’re giving more of a lung dose doing it this way. She said that given that they’re low-energy electrons, I shouldn’t get into trouble and that we can start with this plan and see how it goes. The original plan would give us a more predictable hit to the lung, because she’d use a beam that doesn’t diverge into the lungs. But it does hit the axilla.

So, she said, we can start with the half of her original plan that I like better (using electrons) and see how my skin does. If necessary, we will change our plan. She hasn’t done this kind of alternative approach a lot, because the exclusive use of electrons is an older way of doing things. But she doesn’t think I’ll get in trouble with lung issues by going this route.

I pointed out to her that the area on the picture showing where my lung will get hit is much larger than I had been led to expect. I had been reassured that it would be less than 10% of my lung and this would have no effect on my ability to breathe, that it would cause no shortness of breath. But in the picture, that was the largest damned 10% I’ve ever seen! (Well, I didn’t use the word “damned” when I talked to her.) And now she is talking about using a form of radiation that might further damage my lungs?

She just made a commentary, sitting there looking at the picture with me, “It’s not what you thought.” I agreed that it certainly was not.

With the new treatment plan, the chunk will still probably get fried. So I asked her again about the lung issue. Would it cause me to be short of breath? She said (again) that she’s only caused radiation pneumonitis in someone once. She didn’t think the alternative plan would have any bad effects on my lungs. And she said that perhaps she had painted the effects on the lung of using more electrons for treating the chest wall and internal mammary nodes as too much of a “black hole.”

I told her that this alternative plan she was devising on the fly with me needed to include adequate treatment for the internal mammary nodes, since I know (thanks to my lymphedema specialist) that while 75% of the lymphatic drainage of the breast goes to the axillary area, 25% of it goes to the internal mammary nodes. So there is a very good chance that microscopic disease went to those nodes, and they need to be treated. I don’t want them to be undertreated.

She said that she thought that we could devise a way to make sure that they get adequate treatment. If necessary, we can adjust our treatment as we go along.

Twice I asked her to tell me if she thought I was being a total idiot for asking for a treatment plan that will not hit my axilla at all but that increases management issues for the internal mammary nodes and raises questions about lung exposure. She repeatedly assured me that she didn’t think the plan was stupid or bad at all. If it were, she said, she would tell me so.

Finally, she said that she doesn’t think the alternative plan will increase my risk of recurrence of the cancer in any significant way.

Which is a good thing, because modifying the treatment plan to make it conform to our original agreement means another day’s delay in my starting radiation treatment. We have to do set-up all over again tomorrow.

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I walked out of there feeling increasingly frustrated.

If I hadn’t gone to the trouble of asking, to make sure we weren’t hitting my axillary area, which I had very explicitly and plainly told her I wanted to spare from all radiation (deliberate and incidental), which she had perfectly happily agreed to do—I would still be getting radiation to the axillary area.

What the hell is wrong with these people??!!! You try to be nice, have rational conversations, explain your own treatment and survival priorities, make plans for your treatment, you agree upon a plan together…and then they go ahead and do whatever the hell they want.

I had thought that my days of vigilance were over. That I was in safe waters now. Apparently I was mistaken.