Two weekends ago I needed to do some weed-eating. The grass in certain areas was knee-high and needed to be taken down, and I was feeling good, so I thought I could do it. I got out my weed eater, but I had to spend a few minutes adjusting the strap where it hangs over my left (good arm) shoulder. Someone else had used it the last time, and the strap had been shortened for them. After several tries, which involved taking the weed eater off and then putting it back on again, I got the strap adjusted just right, so that the weed eater hung at about the right level.
At that point I should have taken it off again, laid it down on the ground, and pulled the starter cord. But no. I got lazy. I thought that I could just pull the weed eater around to the front at the same time that I twisted my body to the right to reach the cord. Giving it a yank or two might stress my arm a tiny bit, but not too much (I thought). It took a couple of tries, and the weed eater started just fine.
So I weed eated my garden and around my house. Probably took 1½ or 2 hours to do it all. I should have done the bare minimum––the garden that was so overgrown. But I got on a roll and was feeling good, so I pushed on.
When I was finally done, I went into the house and instead of stripping off my pressure sleeve and doing some manual lymph drainage, I just took a shower and changed into clean clothes and collapsed from the exertion.
About 30 hours later, when I was finishing up some work at the computer the next day, I looked down and noticed that my right forearm was a lot bigger than my left forearm. It had a big bulge, a big lump, in an area where the same contour of my left forearm was flatter and smoother. I felt this bulge on my right arm, and it felt really hard, almost like a rock, whereas the skin on my left arm in the same area was soft and pliable––old lady skin. I immediately began doing manual lymph massage, but I knew right away what this was and why it had happened. I began kicking myself.
The next day (Monday) I contacted my lymph nymph, Val, and she confirmed that these are the signs of lymphedema. I saw Val at an exercise class two days later and she quickly measured my arm. Yup. Swollen. And she saw pitting on the right arm––when she pressed her thumb into the swollen tissue, she left a thumb-print because she was momentarily pushing the fluid in my skin out of the way.
The next week I already had an appointment to see Val in her office for a professional massage, and she did a formal assessment then. No doubt about it. I am now, officially, Stage 1 with lymphedema. I will never go back to being Stage 0 again.
With work, we think we can get it under control again and bring my arm back down to a normal size. But from now on I really have to be very, very careful what I do. I have to be careful to manual lymph massage twice a day (I’d gotten careless). I have to be more careful about not stressing that arm. I had been weaning myself off of daily use of the pressure sleeve, but now I’m back to daily. And instead of wearing the light-weight, circular-knit, over-the-counter pressure sleeve, I’m wearing the heavy, hard-to-put-on, flat-knit, custom-made pressure sleeve I bought early this year when I was burning off flexible health care spending account money. The weave is much coarser and it’s not as comfortable to wear. But…. I’ve been spending more time on the couch with my arm elevated…though I don’t know if that really helps.
I do know that lymphedema hurts. It’s like a dull, mildly throbbing back-ache in your arm. Since I’m right-handed, the hurting does affect my life. The constant aching makes you want to do nothing that uses that arm. For me, that means not doing the two things I typically spend most of my time doing: working at the computer and reading.
Yes, reading. I almost always read non-fiction, and I always underline and highlight as I’m reading. I do those things with my right hand, because I’m right-handed. So lymphedema affects my ability to entertain myself by reading, not to mention my livelihood, which involves huge amounts of computer work.
I’m not sure how this is going to play out in the long run. It’s discouraging. But, as I said, if you accept as an unproblematic “given” that modern breast cancer treatment puts people at risk for lymphedema, then it’s my own stupid fault. I wasn’t as careful as I should have been. I became complacent about how well I was doing. I took chances.
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Though I am discouraged and frustrated, I’ve been surprised at how calmly I’ve taken this latest development. I think in part it’s because at this point in time I know more people with cancer or who have recently been treated for cancer, and I have a larger personal context for understanding what’s happened to me. This sucks. No doubt about it. I don’t want to minimize that. But I know people who are trying to cope with situations that suck so much worse than this…. They’d trade me for my lymphedema in a (rapid) heartbeat, if they had the chance.
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I also have developed pain in my shoulders. The space between the top arm bone and the shoulder bone, where the two come together––it’s like it’s bruised in there, and any movement that uses the muscles that attach in that area causes pain. For awhile I thought it was caused by my being too strenuous in my workout in my exercise class, although this doesn’t make much sense. I’m almost 20 weeks into this class, and it’s a little late to be getting these kinds of injuries.
I’m beginning to suspect that it’s actually one of the side effects of Femara, the aromatase inhibitor (AI) I’m taking. I think this may be what arthritis in the shoulder joints feels like. It doesn’t seem the same as arthritis in the hips, which Femara is also giving me. That feels like a burning, hot, abrasive pain. This feels like an aching and bruised pain.
I don’t quite know how to handle this, with my exercise. Do I push on through it? On days when I’m hurting, do I go more gently, with fewer reps and lighter weights? I don’t know. I suppose some experimentation is in order.
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Among the arthritic joys of taking Femara I must now add another. It would seem that I’m becoming osteopenic, meaning my bones are losing calcium (despite my calcium and Vitamin D3 supplements and despite the fact that I’ve been taking bisphosphonates to try to prevent this) and I’m on my way to developing osteoporosis, with its increased risk of bone fracture. My mom’s brother has osteoporosis, so it’s in the family. If Uncle Dale’s experience is any indicator, osteoporosis hurts. The brittleness of the bones makes them subject to cracking and breaking, and these things hurt. Femara has begun taking me down that road, now, too.
I found out about this new development when I went to a special one-day event at Pinehurst, where the U.S. Open Golf Tournament is played. Ooh-la-la! Such opulence! I can’t imagine what it would be like to have that kind of money.
Anyway, the resort there has a one-day event in October for breast cancer survivors. You can get one free service at the day spa, so I went and got a massage. (One of the best I’ve ever had! Oh, Jay and his magic fingers!) They had various vendors there, too, and one of them had one of those bone density testing machines where you put your heel in and they screen you for osteoporosis. So I did it. Just to see how I’m doing.
I had normal bone density before I started Femara, but now I’m in the osteopenic range *DESPITE* all that I’ve been doing to try to prevent it. I’m hoping that the Boniva (oral bisphos) wasn’t doing the job and that my switching to Zometa (IV bisphos) will prove to make a difference. I had my first Zometa infusion just two weeks before this, so perhaps it just hadn’t had time to work its magic on my bones, yet, by the time I went to Pinehurst?
But if it doesn’t halt the progression toward osteoporosis, I don’t know what we’re going to do about this. I can hardly stop taking AIs. They are proven to significantly reduce my risk of getting cancer again. But they’re also giving me osteo.
Ever get the feeling that I’m on a slow downward spiral that I’m going to have a lot of trouble getting off of?
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This Femara that I’m taking also seems to be having another side effect. Here lately people have been commenting on how skinny I look. I’m down to between 161 and 164 lbs. When this all began, I was tipping in at 227 lbs. I’ve attributed this weight loss to my changed way of eating, and I’m sure that it *is* caused by that. (I didn’t change my diet in order to lose weight; I changed it in order to create an internal micro-environment that would be more hostile to cancer growth. Weight loss was a by-product of this effort to get rid of the cancer and keep it away.)
But I have been secretly harboring some concerns about whether I am going to be able to stop the weight loss when I get down to about 150 lbs., or whether it will continue despite me. I weigh myself every morning, and sometimes days go by when I lose weight even though in the previous days I’ve been eating things that normally make me gain a half a pound or so.
Like cashews. Usually a handful of cashews will pretty much ensure that I will gain a few ounces, maybe half a pound, when I weigh in the next morning. When I can eat a couple of handfuls of cashews and still see a 1 lb. loss the next morning, it begins to make me wonder what’s going on.
This is a fairly new development and has been making me wonder about whether I’m really in control of this weight loss or not. People suddenly all commenting on how skinny I’m looking has made me wonder even more.
Then I noticed that one of the common side effects of Femara is weight loss. OK. Well, I can live with that. At least it’s one side effect that is really nice.
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So why am I taking Femara, you may ask, if it’s making my joints hurt and making me osteopenic? Because it’s a drug that helps to drain my body of estrogen, which feeds the kind of cancer I had.
I was told from Day One that I would be taking an aromatase inhibitor like Femara for five years after my active treatments were done. So in my mind Femara is not a “treatment” drug, but a “maintenance” drug––something you take to prevent the cancer from coming back. To deprive it of a welcoming, estrogen-rich internal environment.
However, it has slowly dawned on me, these last couple of weeks, that for some women who get metastatic breast cancer, anti-hormonals (i.e., aromatase inhibitors [AIs], Femara among them) are their first course of treatment for metastatic disease. They talk on the listservs about using AIs to hopefully control the progression of the disease, trying to move from one AI to another, as one fails and then another fails, all in an effort to avoid having to move on to taking chemo, which is harder on the body.
And as I have been reading these things, it has slowly dawned on me that I’m already taking my first AI. I’m not metastatic (yet) that we know of. But I’m already doing what these women are doing. If I become metastatic, one proposed course of action that my doctor(s) will suggest to me will probably be to simply switch to a different AI in order to try to contain the progression of the disease for as long as possible before I have to move on to chemo again.
It’s a kind of odd feeling, to realize that in taking Femara I have one big toe flopped over into the world of metastatic breast cancer patients, already.
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Yesterday (Friday) I got out and tried to do some work outside. I laid down a bit of mulch. Mostly I hauled firewood from a pile that was dumped in my yard, over to my firewood racks so it will be protected from the elements. I thought I was doing fine. I felt reasonably energetic enough. Good. It was a good workout. As good for cardio and for strength as anything I do at Get Real & Heel (my exercise class).
But by the time I had finished a couple of hours later, I was exhausted. It was all I could do to take a shower. And I was useless all the rest of the day and most of the next day. I have spent most of the last 48 hours sleeping and resting.
I get afraid, sometimes, that I’m not going to be able to keep my property, because I’m never again going to be able to put in the effort to maintain it. And if I lose my job because I can’t work enough hours because of the cancer or its treatment effects, what then? I love looking around and seeing how I’ve taken this sad, gray little property that no one wanted (it was on the market for 2 years) and made it more colorful, more attractive, more efficient, more self-sufficient. More loved and cared about. I’ve built this. I’ve helped it grow, as a property. I would hate to lose it.
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When I get this tired, it affects everything. It’s like I’m too tired to think.
Reading is strenuous, because it requires thinking, in order to comprehend what I’m reading. (Remember, 98% of what I read is non-fiction. I don’t, in general, enjoy fiction.) I can’t focus well enough, when I’m this tired, to be able to think like that.
Doing office-type chores at the computer or shuffling paperwork is too strenuous. It means I have to try to decide what goes where, what should be done first and what next, etc. And trying to make those kinds of decisions seems so difficult.
So I spend inordinate amounts of time lying on the couch with my lymphedema arm elevated, watching some mindless thing on TV, and falling asleep.
Yet there’s so much I need to get done!
This is just no way to live. I’m not back to my old self. My old energy. My old intellectual capacities. I really hate this. It seems like so much is riding on my being able to get back to my old self RIGHT NOW…and I just can’t make it back that quickly. It’s scary.
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I gave a talk last week at the Employee Forum about breast cancer awareness. It was good and yet difficult to be back there. My experience serving on the Forum was one of the best experiences I’ve had in my life. I was diagnosed with IBC on the day that was my last official day as a Forum delegate, last year. I was afraid that going back to that place to talk to that group of people about having IBC would make me break down into a blubbering, bawling mess.
I am happy to report that this did not occur. I did choke up a few times, but I didn’t break down and cry. It was an achievement.
I was told by several people, afterward, that my talk was very moving. The student paper did a short article on my talk (and got every fact right except for one). And the faculty/staff newspaper is going to do an interview with me on Wednesday this week so they can do a feature write-up about me as a worker at my university: “Brenda developed a reputation during her service on the Forum as a tireless advocate for staff employees. Now she’s bringing that same strength to bear in a fight for her life.”
I’ve asked the reporter not to paint me as some kind of saintly, noble person. “After all,” I wrote to him, “we both know that this was not true about me before I got cancer, and having had cancer doesn’t make it suddenly true of me now.” There are too many fluffy, pink stories this time of year in which breast cancer survivors come across as virtual paragons rather than as the real, flawed, scared, determined people facing serious challenges that they really are. We’ll see how this story turns out!
(The reporter and the faculty/staff newspaper editor should know the truth of my lack of sainthood as well as anyone: The Employee Forum Communications Committee that I chaired almost took their paper and the University in general to court over their censorship of our Forum newsletter, which we published as an insert in their newspaper once a year. They, of course, felt it was not censorship, but justifiable editorial control. We were ready to let the courts decide…. But we found an alternative solution that worked well for us.
After all of that, I was pretty impressed that they would want to have anything to do with me now, no matter how moving my breast cancer story might be. But that’s what I have found at the University. More than one person with whom I locked horns, as an outspoken delegate on the Employee Forum, has risen to my aid, defense and support since my diagnosis. It’s really pretty remarkable….)
Anyway, in my talk I gave the Forum info on what IBC is and how to recognize it. It’s the lumpless breast cancer that is not usually detectable with a mammogram. And then I gave them the statistics for IBC:
If you put me in a room with 99 other women with an IBC diagnosis and check back in five years to see how we’re doing, 50-60 of us won’t be there any more. If you check back in ten years, 75 of us won’t be there any more.
Those are my odds. But they’re so much better than they were 20 years ago. In the 1990s, at five years out, 95-100 of us wouldn’t have been left in the room. So that’s progress.
I explained that I’m doing everything I can to make sure that I’m in that 25% who are still surviving at ten years out. (I didn’t point out that “survive” doesn’t necessarily mean I’d be disease-free. Only that I’d be alive.) But then again, I mused, there is no particular reason to think that I won’t be one of the ones who doesn’t make it. We just don’t know.
I’ve had a good response to my treatments, I said, and I’m doing all these extra things, like changing how I eat, taking all these damned expensive supplements every day, trying to incorporate cardio exercise into my daily life regimen…. I’m doing everything I can (at least, everything that seems likely to give me a reasonable “bang” for the buck of time, energy and money expended), but in the end, we don’t know whether I’ll be successful or not. Only time will tell.
I wound up by giving them a “to do” list of four things: know your risk for breast cancer (though my risk was low and I still got this!), know the steps you can take to try to avoid it, be vigilant for the signs and symptoms of regular BC and IBC, and join the Army of Women, which is a research registry dedicated to trying to find the cause(s) of breast cancer.
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I was lying in bed the other night, unable to sleep, thinking about my upcoming interview with the faculty-staff newspaper reporter and wondering what take-away points I want him to have. And I remembered how I wrote, last year, that I felt like I’d fallen into a nightmare and couldn’t wake up. I have been marveling, since then, at how normal this new nightmare reality seems to me, now. What is the process that happens that makes you adjust so thoroughly to living within a nightmare like a cancer diagnosis and the reality of what modern cancer treatment does to you?
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On other fronts, we got new sonogram pictures of L’il Nubbin. You can see five little fingers and five little toes (per limb!). In one shot his/her mouth is open in what looks like a big grin, mugging for the camera, and in another shot the thumb is firmly in the mouth. I think I detect a little winkie in one of the shots, but since I don’t really know how to read these kinds of pictures, I could be mistaken.
Nubbin is due to arrive on March 9th next year. It was on March 10th this year that I finished my cancer treatments and began my new life. It would be nice to have him/her arrive on March 10th next year, to celebrate new life twice over. But no matter…early March is clearly an auspicious time for new beginnings.
My poor daughter-in-law, though, has been having a rough time of it! She had to quit taking some medicines while she’s preggers, and it’s been hard for her. Already, she’s been a great mom, enduring what she’s had to endure, all for the sake of this little person. She’s trying some other stuff, though, and hopefully soon will be able to feel better. One should be able to enjoy one’s pregnancy, instead of having to grit one’s teeth to make it through. (The gritting of teeth normally comes somewhere toward the end of the last trimester!)
As for my son, he seems totally enthralled by this little person that he’s helped to create, but confessed to me that it seems really bizarre to think of this little thing growing inside of you, and he’s glad that we women are conditioned to accept it as a normal thing because it would totally freak him out.
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Well, it’s October––National Breast Cancer Awareness month––and the flurry of pink is almost overwhelming. What I am finding so disturbing about it is the relentlessly upbeat, positive message combined with the studied avoidance of acknowledging certain brutal truths.
One brutal truth is that not all breast cancer can be detected early. IBC being the case in point. We don’t know what it looks like at an early stage, because it’s asymptomatic then. It only shows itself, at the earliest, when it becomes Stage IIIB––one-third of a tick-mark away from being Stage IV (metastatic).
Another brutal truth is how many women are diagnosed with metastatic breast cancer:
• From the outset (6% for all breast cancers combined; about 30% for IBC…and what having metastatic breast cancer means for a patient and her family. The fact that there *is* such a thing as metastatic breast cancer is quietly elided, overlooked and ignored in the all the pink hoopla about early detection and success stories and finding a cure.
patients);
• Later on (30% for all breast cancers combined; an unknown
number, but much higher, for IBC patients);
Yet another brutal truth is, when it comes to metastatic breast cancer (or ANY metastatic cancer, for that matter), there are a lot fewer research dollars devoted to trying to find a cure––about 5% of all research money spent. In this month of warm, fuzzy pinkness for the cure, no one wants to talk about that.
Just as no one wants to talk about the fact that with our current state of knowledge, we don’t know how to prevent mets (though we try), nor do we know how to cure them if they appear. The good news is that today we can treat them, hold them off, try to delay their ascendancy. The bad news is that in the end, we cannot cure them. They will win sooner or later in the life of almost everyone who gets them.
And no one wants to talk about what it means to be Stage IV and know that you have to spend the rest of whatever life you have left going through the physical stress of being constantly in treatment, not to mention the financial stress.
Judging from the reactions on the BC listservs I’m on, this refusal of the larger breast cancer community to “own” its sisters with Stage IV disease is painful. Everyone wants to focus on the happy stories. The early detections. Everyone wants to shout “rah-rah” for the noble fighter who emerges victorious over the dreaded beast of cancer of the breast.
But in this month devoted to breast cancer sisterhood, no one wants to talk about the women who fight Stage IV BC every day of their lives, with poor chances of winning the battle in the long run, but who live and work and love and raise families and have real lives every day, despite the fact that they are also in this ultimately unwinnable fight for their lives. The courage, the strength, the amazingness of these women…all ignored. Because they’re Stage IV, and in the end the story that must be told about them, if it is to be told honestly, is that they are not likely to prevail. Sooner or later, BC is gonna get ‘em.
The fuzzy, pink culture of breast cancer primarily honors the prevailers while it sheds tears for those who have already died. But those who are in between––who are fighting a battle that medical science tells us they cannot ultimately win? Those women are quietly ignored. There is little hoopla about them this month. Little hoopla about women living (emphasis on “living”) every day with metastatic breast cancer. And of all the pink money raised for research, far too little of it will be devoted to trying to help these women.
It’s sad.
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I’ve been thinking about the culture of cancer in this country. It’s kind of interesting. I should become independently wealthy and then do a lot of research on this. Anthropological or sociological research.
As I pointed out in my last blog, the alternative health community has a huge, huge focus on what will help people avoid cancer or cure them of cancer. In too many cases, the rhetorical form that this focus takes is on the one-size-fits-all “cure” that costs just pennies a day and could rid the world of the scourge of cancer forever; the successful treatments spurned or, worse yet, actively suppressed by the medical Powers That Be; the financial empires built on the disability and death that cancer produces, which cannot be endangered by actually allowing a cure to be discovered or widely used.
This is a pervasive rhetorical trope within the alternative health community. There are islands of serious research, serious reporting, and serious discussion there…but you really have to search to find them. They are not as pervasive as the other, more simplistic takes on what it means to try to prevent or to treat cancer.
Mainstream American culture doesn’t approach cancer with an attitude that is a lot different than this, really. There, too, there is this huge, huge dread of “The Big C.” In fact, I suspect that the dread of cancer that permeates American culture is the source of the dread that drives so much of the alternative health community, the difference being in how the mainstream versus how the alternative health sub-culture each deal with the dread.
What is most curious to me is the realization that heart disease kills more people every year than cancer. Despite this fact, we don’t seem to have a similar cultural dread of heart disease. I’ve been trying to figure out why this is. I’ve devised two tentative hypotheses:
(1) Much heart disease is not congenital but is lifestyle based. It’s caused not by something defective in how we were put together, but by how we live. In the deep reaches of human history, most people have not lived long enough and had a standard of living high enough to make heart disease as large a concern.
If it existed on the human health landscape with any frequency in deep antiquity and pre-history, I suspect it was as a limiting factor in the human life span that didn’t get identified as “Oh, Grog died of heart disease.” Instead, it may have been identified as “Oh, Grog died of old age.”
But cancer, identified as such, has been with the human race since we first became human. Cancer has gnawed away at our flesh for millennia. It killed slowly, not quickly, like a heart attack, and it was very identifiable as “something gone awry.” Whether we were children or adults, it has been with us forever, taking our lives. It may (or may not) be more prevalent now, due to environmental toxins, etc. But it’s been with us forever as an identifiable evil. Ergo, we’ve had millennia to develop a deeply ingrained fear of cancer, a visceral reaction of revulsion, that goes above and beyond our fear of heart disease.
(2) We have no model for what cancer does to the human body, while we do have models for what heart disease does.
Heart disease is understandable as the wearing out of a body part. We understand things wearing out. Clothes wear out. Our car blows a head gasket. The fuel pump gets clogged and goes out. The capacitor on our heat pump goes bad (happened to me two weeks ago!). Things wear out, break down. Hearts do, too.
Heart disease is therefore not as scary as it might otherwise be. Not being as scary, we don’t concentrate as much of our dread on it, even if the numbers tell us that heart disease is the number one lethal disease in the U.S. We don’t dread it, because we can kind of understand what goes wrong, by analogy with other things like fuel pumps and blown capacitors.
But there are no such analogies for cancer. It’s hard to understand what cancer does to the body. It’s not just a matter of the body wearing out. The body actually turns against itself and starts destroying itself. And this is just creepy and weird.
I was trying to think of an everyday life analogy for what cancer does, and I couldn’t find one. The nearest analogy I could think of was zombies, which is not exactly everyday life! Heart disease is like a blown head gasket (something you might encounter in your everyday life) while cancer is like zombies. The one is natural and you can fix it, the other is unnatural and really hard to fix. And that makes it very scary.
What is it about the idea of zombies that is so scary, as a literary or cinematic trope? They are dead, but not dead the way they should be. They are the un-dead. That’s scary.
But even scarier is that these un-dead come after the living, apparently (my son tells me) with a view toward eating their brains. These not-quite-living-but-not-quite-dead creatures want to cannibalize the living. They won’t stay put as the dead (a cancer cell that didn’t make it in your body), and they won’t stay put in their own little alive-yet-dead realm (a collection of cancer cells that remains localized and doesn’t break out to become metastatic). Instead, they want to invade the realm of the living and cannibalize them (metastatic cancer).
Is there any more apt analogy for what cancer does to the human body? How yucky is that? More to the point, how evil is that?
We don’t tend to think of something wearing out as “evil.” It’s just a normal event in the course of the lifespan of an object. It’s natural. Things wear out and must be replaced or fixed.
But something being cannibalized? Devoured by its own kind? Now that’s just not natural. And that is what makes cancer so scary. So evil. So much an object of dread. Which opens up a range of possible cultural responses….
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