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Manage My Pain or Shut Up!

Some months ago, I was contacted by Northwestern Hospital to take part in a study designed to

deal with the side effects of Anastrazole, an estrogen blocker frequently prescribed as the last

phase of treatment for breast cancer patients. When I was diagnosed, it was presented at part

of the treatment plan for reducing my risk of recurrence. As I recall, it was supposed to reduce

the risk of recurrence for my type of tumor from 15% to 10%. At the time, hormone therapy

was almost a year off, and taking a pill every day sure sounded easy compared to the

chemotherapy and radiation that would come first.

I had been on Anastrazole about two years when she called, and I was feeling lucky because I

wasn’t experiencing any of the side effects I’d been warned about. I had had some hot flashes,

which are never fun, but they were mild compared to the first time around almost twenty years

ago. Seemed to be shorter, and I would flash back and forth between hot and cold very rapidly.

My friends got used to watching me take off a cardigan, put it back on, take it back off again,

back and forth several times over lunch or dinner. Gave me an excuse to buy some cute new


So when the nice young lady talked to me about Anastrazole side effects, primarily leg pain, I

told her I wouldn’t be a good candidate for the study because I wasn’t experiencing any. She

seemed surprised and asked if she could call again in six months. Sure, I said. Why not? I’m all

for advancing medical science. If they could come up with a good substitute for Anastrazole

lots of breast cancer survivors would be a lot happier. I’ve yet to talk to anyone who hasn’t had

an unpleasant experience with it.

But now, I belong to that group. Several months ago, I started complaining about shoulder pain

when I first woke up in the morning. I blamed my sleeping position (on my stomach, in spite of

years of trying to switch to side sleeping). Or perhaps it was swimming. I had learned the

backstroke, and that does indeed require good shoulder flexibility. It wasn’t too bad, and I

assumed it would go away eventually.

Then my knees started getting worse. I say “worse,” because I’ve experienced knee pain in

some degree starting about five years ago. Which is why I switched from speed walking to

swimming for my cardio. However, since the weight loss during chemo, which I’ve mostly

maintained, my knees were doing a lot better. Why would they now be getting worse?

I began to need more and more time after getting up from a seat at a table, or the very low

couch in my family room, before my legs would hold me and start working. It was getting

embarrassing. I don’t like to think people are giggling at the old lady whose legs don’t work

right. They work fine, all you young twits out there! Just give me 20 seconds!

I was putting all this together mentally when I saw my oncologist for my usual 6-month follow-

up visit in June. She said to me, “Do you find that you need a little time, after you first get up,

and then you take off just fine?” I said, “EXACTLY!” She said, “It’s the Anastrazole.”

Oh. Light bulb moment. All those symptoms I’d been reading about? They’d found me.

So apparently, it’s joint inflammation. Doesn’t bother me when I swim, doesn’t bother me

when I lift weights, doesn’t bother me much at all. As long as I’m moving. When I first get up,

different story altogether.

I started taking glucosamine, but I have no idea if it’s working or not. Tylenol is pretty useless,

and my doctor says no Motrin. So here I am, trying to cope, and trying to decide if I want to live

with the inflammation or give up the Anastrazole. I’ve pretty much decided to tough it out until

December, when I see my oncologist again. I think I could live with a 5% recurrence risk more

easily than with this much pain.

So guess what? The study lady called again and left a voicemail, and I returned her call. She

began to describe the study to me, and pointed out this was a “drug free” trial. Hold on, I said.

How can you find a substitute for Anastrazole without testing an alternative medication? That

was when she told me the study was about “pain management.” As she explained the

protocols, I was feeling more and more hesitant about signing up. When she told me the pain

management techniques would be learned on-line, I was really skeptical. She must have sensed

my feelings, because before I could even tell her I wasn’t interested, she told me I wasn’t a

good candidate for the study and ended the conversation.

Pain management. I’m sick to death of people who want to tell me how to “manage” pain.

How about you find a way to get rid of it? I don’t want to hear about diet, or stress levels, or

exercise programs, or meditation, or worst of all, “mindfulness.” I eat well, I’m still losing

weight, I work out five days a week, and if you want me less stressed, medicate my pain. I

meditate now and then because it’s good for me but I don’t need a study to do it.

And don’t use “pain management” as a synonym for “opioid treatment.” There are plenty of

bogus “pain management” programs out there already for people kidding themselves about

opioid addiction.

And by the way, how do you learn to manage pain on-line? Pain is a VERY real-world

phenomenon. I can just hear the health care folks now. “Well, have you thought about pain

management techniques? I can recommend our on-line program.” Or app. Or some other

stupid way to shift the responsibility from the health care provider to the patient. “Oh, you’re

experiencing pain? You must be DOING SOMETHING WRONG!!!”

Once again, as women, we are expected to sit quietly back and let people blame us for

experiencing something they should be helping us with. I wish I could get Study Lady back on

the phone again. I have a LOT more to say.

Well, that’s what cancer blogging is for. I’ve ranted about cancer, and cancer therapy, many

times to my friends and family, and now my on-line audience, and I won’t be stopping any time

soon. Not as long as people keep writing articles about how to reduce our risk for breast cancer

by eating right, working out, and staying slim and beautiful.

I’ll manage my personal health, my appearance, and my stress levels without you, thank you all

very much. YOU figure out how to manage my pain. And don’t call about any more studies

until you do.


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